The group meets on the 2nd Wednesday of every month from 6:00 - 8:30 p.m. at the Courtyard Marriott on the campus of The Mayo Clinic - Jacksonville. All interested persons searching for knowledge and support to help manage and cope with the overwhelming challenges brought about by this diagnosis are encouraged to attend. No dues are charged although a donation box is available to help defray the cost of office supplies, brochures, literature and printing.
All those attending the meetings share their experience and knowledge regarding treatments, side effects, medical insurance, participation in clinical trials, new scientific and clinical research, etc. in a supportive and encouraging atmosphere. Speakers are often invited who are knowledgeable with these issues and topics.
Upcoming Meeting Dates
August 8: The monthly meeting of our Multiple Myeloma Support Group will be held on August 8 at 6:00 PM at the Marriott Courtyard on the Campus of MAYO Clinic. This support group brings vital information and advice to all those who suffer from this disease, and their caregivers. The meeting this Wednesday will address the subject of Elder Care. This will be especially useful to caregivers, who need to know how to get temporary help so that they can have some time for themselves as needed, without endangering their patient. Future meetings will have other speakers on subjects of vital interest such as patient rights; what your blood work numbers mean; new drug treatments becoming available; etc., and will occur at the same location and time on the SECOND Wednesday of each month. Please come! We would urge all patients and caregivers to make this meeting. . Please come!
Finally, just a heads-up. Anne, Dianna and I are planning for a sponsorship of the Red Cross Bloodmobile this summer. While I don't think any of us can GIVE blood, we have probably all of us had infused of whole blood, plasma, or white cells, so we need to induce our friends to support this event.
As always, all interested people are invited to join us and walk-ins are always welcome.
Future Potential Topics
Acupuncture as an Alternative Therapy
The Future of Stem Cell Transplants
Deciding between a SCT and Alternative Therapies
Seeking Support from your Church or Parish Health Ministry
New Drugs for Refractory Patients
Financial and Legal Issues
Serum Free Light Chain Assays
Maintenance Regimens for those in CR or VGPR
Understanding your Lab Reports
February 8, 2012:
Anne Pacowta announced that the scheduled speaker was unable to attend and so our program would feature the Patient and Family Seminar held in Boca Raton, Florida on Friday and Saturday, February 3-4. Twelve of our group attended.
An open discussion, "Ask the Expert," with Doctors Brian Durie (IMF) and Rachid Baz (Moffitt) opened the seminar on Friday. Some of the topics discussed were:
DEX has a crucial impact on myeloma response , survival and all outcomes
Revlimid is the drug of choice for maintenance.
Having surgery for other medical problems is usually not a problem. Quality of life is important. One should have surgery in a big facility with much experience.
Peripheral neuropathy should be reported immediately to the oncologist for early treatment. There is no cure for PN, although it may disappear in the case of Velcade.
To avoid bad drug interactions, one should use one pharmacy system, not multiple so that pharmacists can see the full record.
The IMF hot line can help patients to see the dangers of drug and supplement interactions.
The debate about stem cell transplants or not continues. The aggressiveness of the myeloma tends toward having a SCT. Good health, not age alone, affects the choice in those over 70. (An 80-year old patient has received a SCT.) Dr. Kumar said that treatment for elderly is basically the same as for younger patients. The opinion, however, is to transplant as soon as possible.
In tandem transplants, the second one usually gives on a 50% CR time.
It is important to take aspirin or another anti-coagulant when taking Revlimid.
The experts seem to favor maintenance drugs after a SCT.
Dr. Barlogie of Arkansas urged patients to have a gene assay. The future treatments will likely be based on matching genes to effective drugs.
There was no report on the IMF's "Bank On A Cure" genetic study.
Children of mm patients do not need to be tested since there is no evidence that the disease is inherited.
With informative blood tests available, there is no need for frequent bone marrow biopsies.
Gary Petersen reported that he continues to study the survival rate at various centers that treat mm patients. Experts have emphasized that many variables affect the data. For example, high risk patients trying new treatments might bring down the survival rate. He has used data available from treatment centers and the National Cancer Institute, SEER. SEER is the acronym for Surveillance, Epidemiology and End Results. His website with the data is: www.myelomasurvival.com
Beth Finley-Oliver, RN, OCN, led the discussion about side effects. Among the recommendations was to notify the doctor when side effects are severe. Wearing panty hose or compression hose are helpful when traveling to prevent blood clots.
Dr. Rudi Hrncic presented information about the FREELITE Test. (He will be speaking to our group in May.)
Mike Katz talked about his experience as a 21-year mm survivor. He is an executive board member of the IMF.
Dr. Anderson of Dana Farber Cancer Institute reported on the new drugs now in clinical trials. Expected for approval in the near future are:
Carfilzomib, a proteasome substance similar to Velcade; by infusion
Pomalidomide, another Thalidomide analog
Subcutaneous injection of Velcade
It was announced that we continue to collect used cell phones as a fund raiser.
Next month's speaker will be Dr. Asher Shannan-Kahn, who chairs the new mm unit at Mayo Clinic, Jacksonville. Millennium will provide our dinner that evening. Members are asked to respond if they are attending.
April's speaker will be Pauline Saade, a Celgene representative.
In May Joanie Borbley, the IMF representative, will present Myeloma 101.
Anne reminded members that there is a listserve for myeloma, whose list owner is the IMF's Mike Katz. The address is: MYELOMA@LISTSERV.ACOR.ORG It is possible to sign up for the digest delivery, which means fewer daily messages. ACOR is the acronym for the Association of Cancer Organizations.
January 11, 2012: Judith Struck - Body, Mind & Spirit of Healing
December 8 - We now have the date set for our Christmas dinner. It will be on December 8. Could you please also let us know if you expect to attend, and if you will be bringing a guest? It will be at the Sawgrass Beach Club, as in the past. It should be quite fun! I'll be keeping track of the attendees for both these meetings, so let me know if you are coming!
November 9, at 6:00 PM - We will have a speaker from Diplomat Pharmacy. Her name is Brenda Williams. Diplomat Pharmacy is a Specialty Pharmacy. Specialty Pharmacies handle all the special drugs that keep us going, and it will be interesting to hear her "take" on the drug situation from her perspective, as well as to become acquainted with the special services that this Pharmacy has available to ensure that taking the right drugs at the right time is assured. We will, as per usual, meet at the Marriott Courtyard on the Mayo Campus at 6:00 PM.
October 20, at 5:00 PM - INTERNATIONAL MYELOMA FOUNDATION Presents: Update on Novel Therapies TELECONFERENCE Click for Details
October 12, at 6:00 PM -
Members again enjoyed a delicious dinner from Millennium with Heather as hostess.
Heather then introduced Millennium Ambassador June from Virginia, a caregiver whose husband was diagnosed with myeloma five years ago. Since then he has undergone both autologous and allogenic transplants.
June's own story during the difficult times was dramatic and touching. Overcoming stress was a personal challenge, since the stress induced severe physical problems. She emphasized that the caregiver cannot help the patient unless the caregiver's needs are met first Education about the caregiver's needs as well as the patient's is the essential first step. A strong support system from friends and family is invaluable.
After members' updates, Anne Pacowta announced that we continue to collect old cell phones as a fund raiser.
September 14, at 6:00 PM -
After an enjoyable dinner presented by Millennium Pharmaceuticals, Anne Pacowta introduced hosts Andy and Heather. Andy introduced Tom, a Millennium patient ambassador from Chicago.
Tom offered "myelomics" hope as he told of his diagnosis four years ago and the subsequent treatments to maintain his health. During this time he has continued to work as a consultant for the National Football League.
Andy announced that last week Mayo began a new myeloma unit with the arrival of a respected myeloma specialist and supporting nurses. As part of Millennium's educational program, he offered some "non-branded" resources for group members. These brochures offer information about available financial aid, such as that from the Leukemia and Lymphoma Society. He also emphasized checking for new clinical trials on line at clinicaltrials.gov.
Heather, an oncological nurse, urged newly diagnosed patients receiving Velcade to register immediately with for possible reimbursement from Millennium, even though at the time they have adequate insurance.
For new information about Velcade and its programs, the phone number to call is: 1-886-VELCADE.
We continue to collect old cell phones as a fund raiser.
There will be a patient/family seminar in Boca Raton.
Two new members and their caregivers were introduced.
Member Rhonda K. is undergoing an autologous stem cell transplant this week.
Millennium will again host an educational/ambassador program with dinner for October 12.
November 9 a specialty pharmacy will discuss prepackaging medications.
Members would like to have a Wednesday night dinner in another venue for the December meeting.
August 10, at 6:00 PM - Dr. Rudi Hrnic, MD - Dr. Hrnic is with the Binding Site, the group that developed the light chain diagnosis technique for Multiple Myeloma. The last time we heard from him, his lecture was really at too high a level for us, but his new lecture is aimed directly at giving us an understanding of what this test means for us.
June 8, at 6:00 PM I'm sorry to report that our featured speaker has asked to be rescheduled for August. So we will have to wait until then to hear about Light Chain Testing - a subject of great interest to us. My understanding is that the Light Chain Test anticipates changes in blood chemistry ahead of the "M" spike test. We all can take advantage of that extra time to react to changes in our blood chemistry. As a result of the change in speaker, we will instead meet as scheduled for a roundtable discussion of how each of us is doing. As per usual, the meeting will be at 6:00 PM on June 8, at the Marriott Courtyard on the campus of Mayo Clinic. We hope you will come, even without a speaker!
May 11, at 6:00 PM
Dianna and Hunter Chiles welcomed members and the guest speaker, Joan Borbely.
Ms. Borbely, the Regional C0-director, Support Groups of South East, offered DVD's from the Boca weekend seminars. Summaries of the IMF seminars in Paris can be found at myeloma.org. She also recommended Jack Aiello's blog for information.
Next she presented slides on the psychological aspects of a myeloma diagnosis. A 21-year myeloma survivor and IMF board member, Mike Katz created the presentation that stresses a positive attitude.
Some of Katz's suggestions are:
Get a second opinion.
Stay informed. (IMF publications help with this.)
Always get copies of lab reports and other important data.
Make a list of what you need for those who offer help.
Join a myeloma support group or seek support from a religious/spiritual group.
Maintain connections to friends and family.
Avoid doom and gloom and try to live as normally as possible.
Keep the diagnosis to yourself, if that is what you prefer.
The Chileses and Ann Pacowta requested members' opinions about having a summer picnic or a Christmas party. E-mails about this would be appreciated.
There was a reminder to contribute old cell phones.
The next meeting will be June 8, 2011 with Dr. Rudi Hrncic from The Binding Site, who will talk about FreeLite testing.
April 13, at 6:00 PM
Notes from the April 13 Presentation
Ms. Kathy Steele gave a very complete explanation about all the numbers that come out of our blood tests, and what they tell your Oncologist. She also introduced a very interesting description of how your white blood cells work. Did you know that there are 5 different types of white blood cells? I didn't! There are your NE cells, which she characterized as being the "Police Officers" in your blood stream, constantly looking out for trouble. The LY cells are characterized as "little PAC Men" whose function is to go after the trouble that the "police Men" uncover, and eat them. The MO cells are characterized as "Radar Warning Systems" Which look out for things in the body that are not right, such as the onset of a cold or virus, and warn the "police officers". The EO cells are there to take fight allergies by releasing Histamines. Lastly the BA cells are categorized as "vacuum cleaners" that eat up allergens, fungi and bacteria. Interestingly, all these cells have only a life of about 6 hours, and are constantly being replaced. (See - even after 8 years with this disease, I learned something new and fascinating about my body!)
As a part of the presentation, we showed the power of the IMF's Myeloma Manager. If you have not already done it, we strongly recommend that you get it from the IMF. The website is www.myeloma.org. Then type "Myeloma Manager" into the "search" box, and it will come up. As you download it, you will get the implication that there is a cost. THERE IS NOT!! When you check out, you will see that the price is ZERO. This program will allow you to store the records of every blood test that you have taken. While inputting the data from your past tests is a bit of a chore, once you complete this, you will no longer have to keep hard copy of your history, and only input your latest tests. This program is very easy to use, and there are a number of us who use it regularly and can help you with any questions you might have. Also, when you download the program, you can also download an "Operator's Manual" which is quite clear and complete. Once your data is inputted, you can then view and print out a graph of each single test, so you can see where you are, relative to "normal", as well as whether you are going up or down in that data. You should expect to find variations in the data. For example, I can look at the data, and say to myself, "Oh yes - that is when I had a head cold and had to take antibiotics," or, "That was when I was on DEX!" Very useful stuff!
If you missed this meeting, I think you missed a lot of interesting and good information. In fact, Kathy had a movie we pulled up of a LY cell under a microscope actually chasing and devouring a bit of foreign matter! It was exactly like the old PAC-MAN game!
PS: I apologize for not having as complete a set of notes as Frances provides for us, but she was unfortunately under the weather for this meeting.
April 2 IMF Regional Community Workshop 8:30AM - 3:00PM
Speakers: Dr. Vivek Roy (Mayo Clinic -Florida)
Dr. Rachid Baz (Moffitt Cancer Center),
Elizabeth Finley-Oliver RN, OCN (Moffitt)
The workshop is free of charge (registration is required)
March 9, at 6:00 PM
February 9, at 6:00 PM
Anne Pacowta welcomed members and reminded them of the important local IMF day seminar on Saturday, April 2. Since the list is filling quickly members should call soon to register at 800-452-2873 and ask for the Regional Community Workshop registration.
Jacksonville Regional Community Workshop: Transplant, Novel Therapies, Side Effects Management, Supportive Care Registration 8:30 AM
Workshop 9 AM to 3 PM
Dr. Richid Baz of Moffitt Cancer Center
Ms. Elizabeth Finley Oliver, RN
Cannaday Building, Kinne Auditorium
A nurse will discuss lab tests and results at the April 13 meeting.
In June Dr. Hendrik of the Binding Site (Freelite test) will be our speaker.
A picnic is being considered for June.
After distributing notebooks from the recent family and patient weekend in Boca Raton, Anne summarized items of interest.
Besides Anne, others attending were: the Chileses, the Rutledges, and the Edelans. Joan Edelen added to the report given.
Anne told of Dr. Morie Gertz's analogy of the bone marrow as a flower garden with bad weeds. The problem
is to find something that kills the weeds without killing the flowers.
Note: There will be DVD's of the seminar available later.
The experts featured were mm specialists Gertz (Mayo), Durie (IMF), Anderson (Dana Farber), Barlogie (Arkansas), and Bocadoro (University of Torino, Italy).
Other speakers were: Dr. Henrik of the Binding Site (Freelite Test); an oncology nurse; and Mike Katz of the IMF, a 20 year survivor.
Diagnosis: Anemia is the number one symptom that leads to the mm diagnosis. Eleven percent of patients had no symptoms noted before diagnosis.
Causes of mm: Exposures to certain chemicals are suspected, as in the case of many firefighters at the Twin Towers and
the military in Vietnam. Dr. Durie said no studies show a clear hereditary link.
Of interest for Velcade patients
Cutting back on dosage helps PN.
Don't take B Vitamins on the day Velcade is given.
Green tea also is a no-no in that 24 hours.
For Revlimid patients: Revlimid has now been given to some patients effectively for 5-8 years.
Bone treatments and medications
Kyphoplasty is preferable to Vetebroplasty.
Zometa is given for smoldering mm.
Zometa and Aredia do not rebuild bones. They stop bone loss.
With Zometa usually there is no kidney involvement till after 2 years.
With Aredia usually there is no kidney involvement till after 6-7 years.
The PN from Thalidomide is more a numbness than pain but is permanent.
Velcade PN is more painful but lessens or can go away eventually.
Subcutaneous injections of Velcade seem to cause less PN. (Now in trials)
Some patients get help from L-Glutamine, an amino acid.
Some find hypnosis helpful.
New drug Pomalidomide: The next generation of Revlimid, an oral drug in trials, seems to have fewer side effects. It
may be available in 2012.
Stem cell transplant (SCT)
Depending on general health, 65-70 is the cut-off date for SCT's.
It is recommended to stay with chemo as long as possible and have cells collected while numbers are low.
Some changes may occur after a transplant. For example, a patient may change to "lamda" after being "kappa," or there may be chromosomal changes.
When to return to treatment: If in PR (Partial Response), watch for CRAB (Calcium elevation; Renal problems; Anemia; Bone disease).
PET scans and MRI's
Always inform of having mm when getting a test involving dyes in the bloodstream. Dr. Durie reported that no dyes are now needed for MRI's.
Medicare will now pay for PET scans, which show the results of treatment two years earlier than will an MRI.
Freelite Test: The kappa chains can vary as much as 30% without indicating worsening disease.
Watch for DVT's (deep vein thromboses): swollen warm extremity; rapid heart beat; any blue on skin. Report immediately.
Watch for bruising easily, nose bleeds, and reddish purple spots. These may indicate low platelets.
Do not get shingles vaccine, which has live viruses.
Managing side effects and maintaining good health
Drink lots of water (unless renal problems forbid it).
Exercise if possible.
Do not take ibuprofen (hard on kidneys).
Be aware of all the possible side effects from Decaron (dex): glucose elevation; mood changes; flushing; cataracts; muscle weakness; insomnia; indigestion (may need acid blocker drug), etc.
Ginger and peppermint tea may help.
Don't lie flat after eating.
Avoid citrus and tomatoes if having problems.
- Frances Stelling
January 12, at 6:00 PM -
After a welcome to new and old members, Anne Pacowta introduced Nancy Stanton from AARP and Marilyn Parker from Shine to talk about health insurance issues.
Using printouts of a slide presentation, Ms. Stanton showed provisions of the new federal health care law. Portions that will affect care for those on Medicare are:
7% discount on generic drugs while in the "donut hole."
such preventives as colonoscopies.
A free wellness medical visit is provided as well as expanded coverage for such preventives as colonoscopies.
Copayments or deductibles for approved preventive care are eliminated.
Other provisions affecting non-Medicare people are: insurance for those with preexisting conditions; no lifetime or annual caps on benefits; exchanges for paying private insurance; expansion of Medicaid; extension of coverage for adult children up to age 26; and benefits for long-term care for those not retired who purchase long-term care insurance.
:Ms. Stanton offered many AARP publications outlining provisions of the new law and recommended the AARP and the Kaiser Family Foundation websites for information.
One member noted that the cuts in Medicare payments to physicians are causing fewer family doctors to accept Medicare or even to go into the profession. Ms. Stanton replied that the Medicare cuts were not in the new law but that Congress has postponed cuts.
Ms. Parker, from SHINE (Serving Health Insurance Need of Elders), explained that the program, begun in 1992, receives all funding from Medicare but is administered by the Florida Department of Elder Affairs. The name is unique to our state.
With 650 well trained volunteers plus salaried staff, SHINE helps seniors to find the best insurance available for them and to find assistance for those who cannot afford to pay for drugs when they fall into the "donut hole" or for non-covered drugs. The program also handles fraud and abuse claims as well as appeals. She promised that someone can help "myelomics" taking very expensive drugs to get financial help.
October 13, 2010.
At our regular monthly meeting on October 13th, our speaker was Linda Levin from ElderSource. ElderSource is an AGING RESOURCE CENTER an organization funded by state and local government to provide support to people 60 and over who have an income or frailty problem. Those suffering from dementia can receive help from ElderSource at any age. We were enlightened to find out that there are so many areas and avenues of support available to the senior citizens of Florida.
Linda explained that when a service is needed, it is put out to bid for a contractor or provider to compete to provide the service or help needed. The areas that eldercare is involved in are: senior centers, dining, recreation, education, transportation, respite for caregivers, home modification, health and wellness classes and caregiver support groups just to mention a few.
They are an advocacy organization for consumer fraud and are a source for information on all aspects of dealing with aging and income problems. What they can't do, they have a referral for. Linda also explained that these services are available nationwide under different names, but here in Florida our AGING RESOURCE CENTER is ElderSource. For information on ElderSource call 904-391-6699 or 1-888-242-4464 or www.myeldersource.org. Many were pleased to know that there is also help available to negotiate hospital bills, Medicare, Medicaid and health insurance questions. SHINE (Serving Health Insurance Needs of Elders) is a program offered by the Department of Elder Affairs. They provide one on one counseling and their services are free and confidential. To contact SHINE call 1-800-96-elder 1-800-963-5337 or www.floridashine.org.
September 8, 2010.
At our meeting last night, we were given a flyer on an upcoming meeting on Neuropathy, a common side-effect of the drugs that we take. If you wish to go, please take a look at the attached flyer, and note that an RSVP is requested. This is in PDF format. If you can't open it, you might want to go to http://www.adobe.com , and download a FREE PDF reader. Then you will be able to open ANY PDF file now and in the future. Cheers!
FREE DINNER!! (Have I got your attention?) Our next meeting on Wednesday, September 8 will be pretty special. We will have a presentation by Rick Sulak, Health Systems Manager for Millennium Pharmaceuticals - The Takeda Oncology Company, accompanied by Heather Smith, RN, OCN. Millennium is, if I am not mistaken, the manufacturer of Velcade. His topic will be TYBS (Take Your Best Shot) and concerns itself with the present state of the art on treating Multiple Myeloma. The program will be of great interest not only to newly-diagnosed Multiple Myeloma patients and their caregivers, as well as those of us who have been living with this disease for some time. Knowledge is power, and this will increase all of our knowledge bases. See you there!
August 11, 2010. This will be an especially informative meeting as we will be having two events running concurrently. Joanie Borbely, our new IMF coordinator will be with us to present a slide show on "Managing Multiple Myeloma's Side Effects." In addition, Anne Mc Neil form the Nurses Advisory Committee will be with us on line to answer any questions that we have either already submitted, or which occur to you after the slide show. This will be a rare opportunity for all of us to get any of our "nagging' questions answered. We hope to see you there!
On Wednesday, August 11th, CancerCare will offer a free telephone workshop, Advances in the Treatment of Multiple Myeloma. The workshop will take place from 1:30 to 2:30 pm Eastern Time.
Expert speakers will discuss the current standard of care and new
treatment options, how clinical trials contribute to treatment options,
symptom and pain management, dental care before, during, and after
treatment, communicating with your health care team, and much more. The
half hour presentation will be followed by a question and answer session
with the speakers, moderated by Dr. Carolyn Messner, Director of
Education and Training at CancerCare.
The featured speakers are:
Kenneth C. Anderson, MD, Kraft Family Professor of Medicine, Harvard
Medical School, Chief, Division of Hematologic Neoplasia, Director,
LeBow Institute for Myeloma Therapeutics, Director, Jerome Lipper
Multiple Myeloma Center, Vice Chair, Program in Transfusion Medicine,
Department of Medical Oncology, Dana Farber Cancer Institute
Noopur Raje, MD, Assistant Professor, Department of Medicine, Harvard
Medical School, Director, Multiple Myeloma Program, Medical Oncology,
Massachusetts, General Hospital
Douglas E. Peterson, DMD, PhD, Chair, Program in Head & Neck Cancer and
Oral Oncology, Neag Comprehensive Cancer Center, University of
Connecticut Health Center
Richard Dickens, MSW, Blood Cancers Program Coordinator, Mind/Body
Project Coordinator, CancerCare.
July 14, 2010. - We had a very interesting meeting on last Wednesday! Guy Ratzlaff demonstrated how to get on line at the IMF to unload their free program that allows you to keep track of your lab results, to chart them, as well as compare them to what is "normal" for a Multiple Myeloma patient. I have attached the instructions on how to download this file. Once you have downloaded it, it should create an icon on your desktop, which you can then use to download it. At that point, you can start putting in your data. Don't worry about the chronological order in which you input data; the program itself will take care of that. If you run into any problems, Guy has graciously agreed to field your phone calls, and help you through it. Now you know why we continue to emphasize that you have RIGHT to your lab results, and should DEMAND them. When you get this going, your Doctor will be amazed it what you have done, and will find the graphs especially helpful in your diagnosis and treatment. download the instructions here
June 5 - Summer Party!! Our 2010 summer party was visited by the newest superhero: Myeloma Man! Watch this hysterical video and come and join our group!
June 9, 2010 -
Dr. Vivek Roy, MD was our speaker to discuss stem cell replacements and other issues revolving around stem cells. HE emphasized the these stem cells were stem cells from our blood, and NOT embryonic stem cells. The process is designed to be able to give high dosage chemo to the body by first removing stem cells for re-insertion after chemo, then re-introduce these cells after the chemo has disappeared, and wait for the stem cells to retake the development of the components of our blood. He noted that some of the stem cells reintroduced will still be abnormal, but there is no way to clean them out. There are two types of stem cell replacements - Auto (your own stem cells) or Allo (somebody else's stem cells). There is a risk with both, but the risk with Auto is about 2%, and with Allo, about 20%. The major risk with the Allo transplant is that the body rejects the new stem cells as foreign material. This shows up in liver, bowel, and abdominal pain problems. Dr. Roy noted that there is a controversy right now as to whether stem cell replacements are better than chemotherapy with the new drugs now available. He is not yet convinced that chemo is better than stem cell replacements. Here are the steps for doing a stem cell replacement:
Get the MM under control with Thalidomide and DEX.
Collect your stem cells
Freeze the cells
Take two days of high-dosage chemo
Reintroduce stem cells
Watch for about 14 days to ensure that stem cells "take"
When then released from the hospital, you will stay in the area for about a week, no more than 30 minutes away
In 3-4 months you may start to feel "normal", and in 1 year, you should be "normal"
An interesting acronym is "CRAB". It is an acronym for the four areas that indicate that you may have MM:
"C" - Calcium value over 11.5
"R" - Renal value over 1.6
"A" - Anemia value less than 11
"B" - Bones any involvement whatsoever (liptic Lesions)
May 12, 2010. - we will have our regularly scheduled meeting at the Marriott Courtyard on the campus of Mayo Clinic at 6:00 PM on May 12. Anne is going to be out of town that day, so Dianna and Hunter will host the meeting. Our scheduled speaker has requested that he be allowed to speak to us in June, instead of May, so this meeting will not have a speaker, and we will have more time to share with each other what is going on in our treatments. We hope to see you there!
April 14, 2010 - We will meet once more at the Marriott Courtyard on April 14, at 6:00 PM. The subject for this meeting will be Yoga. Yep - that's right - Yoga! All of us who have this disease, as well as our care givers have periods where we are tense, uneasy and rather up-tight (does the name DEX ring a bell??). We will be educated by a Yoga Therapist, Nadine Bridges on how to use Yoga to become more relaxed and serene in our lives. This should be very interesting. If you want to participate actively, please dress appropriately, and if you have one, bring a yoga mat.
March 10, 2010. On March 10, a joint meeting was held with the Leukemia and Lymphoma Society and the North Florida Multiple Myeloma Support Group on the campus of Mayo Clinic. The Leukemia and Lymphoma Society, under the management of Lynnette Mills graciously furnished a dinner for all who attended. Our speaker was Dr. Dr. Lawrence A. Solberg, Jr. of Mayo, a noted oncologist. Dr. Solberg explained the functions of the various components of the blood, with particular emphasis on how stem cells in the bone marrow make the various components of the blood. In particular, he noted that when these stem cells "mutate" and begin to make odd proteins which the body does not need, that this is how Multiple Myeloma begins. In discussing various treatments that are available for Multiple Myeloma, Dr. Solberg mentioned that Mayo had done some statistical analysis of their past patient base approximately 10 years ago, and found that half of the patients were no longer with us after just 30 months. He pointed out that the combination of drugs now available for treatment of Multiple Myeloma have stretched that period out significantly. Two drugs in particular - Revlimid and Velcade have shown to be extremely significant in extending life. There are also other new drugs in the "pipeline" that may offer even more significant help in creating remission in patients. Finally, he discussed Clinical Trials. There are three phases in a clinical trial. Phase 1 tests the drug against actual cancer cells either in test tube experiments or laboratory animals. If the drug proves to be useful in combating cancer cells and not overly toxic, the next step is a Phase 2 trial, which is designed to determine the best dosage level and delivery protocol. The third phase is to determine the effectiveness of the drug and delivery protocol against cancer in humans. Dr. Solberg urged all of us to consider becoming a part of phase 3 testing, if we meet the other criteria of that particular trial.
February 10, 2010 Dr. Christian Guier, Doctor of Ophthalmology at Mayo Clinic addressed us with a very interesting lecture on diseases of the eye. Fortunately, with one exception, there does not appear to be any strong linkage between diseases of the eye, and the various medicines and other therapies that we take for Multiple Myeloma. The exception is that there appears to be a linkage between the use of Dexamethazone and the incidence of cataracts. Dr Guier points out that nearly everyone will someday have cataracts, but there is some evidence that "Dex" may speed up the process. The good news, though, is that cataract surgery is quick, very simple and easy on the patient, and gives virtually instant improvement. Many of us have already had this surgery, and the difference in color that the repaired eye sees on the way out of the surgical suite is really remarkable. In addition, new developments in the replacement lenses themselves are such that the replacement lenses are now able to change focus enough that in most cases, reading glasses will not be required after the surgery.
6:00 PM at the Marriott Courtyard on the campus of the Mayo Clinic. We will have Dr. Christian Guier as our speaker, who will discuss some of the issues related to Multiple Myeloma's effects on eyesight. That should be a very interesting copy, and one that we have not addressed in the past.
January 13, 2010. Wednesday, January 13 at 6:00 PM. The meeting will be at the Marriott Courtyard on the campus of Mayo, as per usual. We will not have a speaker this time, as the agenda item of interest is to plan for 2010. Please come, and share your ideas on how we can make this group even better! Look forward to seeing you! And Happy New Year!
November 11, 2009. Our speaker is Pat Killingsworth, who is a fellow Multiple Myeloma sufferer, and has authored a book on his journey with this disease. It should be especially interesting.
October 14, 2009. All of you will recall the discussions we have had in the past about what all these numbers from our blood tests mean. Well after about six months of frustration, Anne has finally been able to pin down a speaker to discuss this topic. Our dear friend K. C. from Mayo, whom we all know and love, is willing to come to our October meeting, and - by the numbers - go through each value in our blood tests, and explain what they are measuring, where the value would ideally be, and exactly what the doctor is looking for when he looks at the specific test results. She may also be able to get into some symptoms that you might encounter that would be tip-offs that you need to have your blood checked. This will be an extremely important and informative meeting, and one that will deliver information that we all have been wishing for. Don't miss it!
September 9, 2009. When Dianna and I were at the Support Group Leaders Meeting in Dallas, we heard a presentation from Proteolix, a small biomedical firm that is presently in field trials on a startlingly different cancer drug. Most of the cancer drugs that we are taking kill cancer cells, but also kill good cells in our body. (Thus the one-week off period for Revlimid to let your body recover.) But the drug they have developed is quite different. As we all know, cancer cells have forgotten how to die, so they readily multiply, and that is what causes all our problems. Proteolix has developed a new drug - CARFILZOMIB - that acts in quite a different way. It attacks specific cancer cells from the inside. It gets into these cells and teaches them, in effect, how to die. It is, as I understand it, in the same classification of drugs as Velcade. This is a tremendous advance, as it does NOT affect your good cells. We have asked the CEO and the Chief of Clinical Trials to come to our group to share with us two things - an update on this drug, and how the trials are going, and also to give you a thorough background on just what a company has to go through to get approval of a new drug from the FDA. This is one meeting that you don't want to miss!!
Here is the photo of our speakers for the meeting last evening. They were very well received and gave their time generously after the meeting. There were 24 of us in attendance.
Their names are Susan Demo, PhD, and Mai Li, MD. L-R in the photo. They are from Proteolix a company now in clinical trials with an investigational drug called Carfilzomib. They explained how drugs are created which fascinated everyone and how clinical trials are run.
August 22 - Summer Picnic. Thanks to a generous grant from Celgene, the North Florida Myeloma Support Group was able to host a summer picnic at the Sawgrass Beach Club in Ponte Vedra Beach. We had an excellent attendance, and the food was awesome. We even had some entertainment thanks to Gary Petersen, who was able to invite a troupe from The Improv to entertain us. It was great to get together with so many of our close friends for this party. Thanks Celgene!!
July 8. This meeting will feature two speakers who will tell us more about Long Term Health Care insurance, what it covers, who needs it, and when a cancer patient qualifies for it. In addition, they will discuss the present Medicare program, as well as various supplement or "Medigap" policies that are available for those who feel a need for them. At the Marriott Courtyard on the campus of the Mayo Clinic at 6:00 PM.
June 10, 2009. At our June 8th Meeting, we were fortunate to have Ms. Leigh Ann Seaman, RD, LDN as our speaker. This session dealt with the myriad of problems that Multiple Myeloma sufferers must endure. There was so much information that we can only show the highlights here.
When one is faced with treatments, it is imperative to maximize nutrition before, during and after treatments. This will minimize the symptoms and side effects of the treatment. Before treatment, one should create "nutrition reserves," adding healthy snacks containing calories, protein, vitamins and minerals. Some suggested snacks are: Toasted whole grain English Muffins with Peanut butter and apple slices, cottage cheese and fruit, smoothie (recipe attached) yogurt, fruit, ice and protein powder, supplements, milkshakes, cereal and milk, hard boiled eggs and juice.
How to cope with side effects of treatment: take small frequent meals to lessen the volume in the stomach, even if this makes you nauseous. Sip fluids between meals rather than with meals. Eat and drink slowly, avoid too hot or cold foods, watch out for higher fiber and greasy foods. (Example: baked potato - no skins - instead of fries.) Stay away from strong smelling foods, relax but do NOT lie down after meals. Engage in distracting activities such as music, movies or crossword puzzles. Foods that are better tolerated include: crackers, broth, toast, sherbet, mashed potatoes, cereal, plain pasta, fish, lean baked meats, cottage cheese, soft cooked vegetables, fruits, and rice. Foods that are not so well tolerated include: anything fried, beans, acidic foods, spicy foods, raw vegetables.
How to cope with diarrhea: Avoid high roughage or fiber foods, as well as whole grain breads and cereals, raw fruits and vegetables (but Bananas are OK) beans and peas, nuts, dried fruits, popcorn, greasy foods, spicy foods, over-seasoned foods, dairy foods (maybe OK) Ensure is OK. Eat small frequent meals to lessen the volume in your GI tract, drink plenty of fluids between meals. (Gatorade and Power Aid are good) , avoid very hot or very cold foods.
For constipation: Increase fluid intake, eat more fiber such as fruits and vegetables, whole grain breads , cereals, pasta, rice, beans, peas. Prunes or prune juice will help.
How to cope with dry or sore mouth: Soft and easy to swallow foods, cook to retain moisture - poach, stew, steam braise. Moisten foods with broths, cream soups, butter, gravies, salad dressing, sour cream, mayo, sauces, and milk. Add protein power to drinks, avoid acidic foods. Try cutting foods into small pieces, ground puree mask or blend them. Some people try baby food. Well tolerated foods include: casseroles, cooked cereal, sherbet, ice cream, shakes, Jell-O, pudding, custard, mashed potatoes, scrambled eggs, applesauce, tuna and chicken salad, meat loaf, macaroni and cheese, pancakes, cottage cheese, muffins, cream soups, macaroni salad, stuffing with gravy. Foods to avoid include: salty foods, spicy foods, raw fruits and vegetables, granola, tomato based products, citrus juices, tough meats.
If your taste seems to have changed: Experiment with sauces or seasonings, add bits of ham, onions, peppers, huts, bacon bits, relish, (sugar or salt if diet allows) Try to eat foods the opposite of your changed taste: examples - if everything tastes sweet, eat salty foods such as cheese, chips, deviled eggs, salted nuts, soups. If meat doesn't taste good, eat other high protein foods, such as eggs, yogurt, shakes., cottage cheese, cheese containing dishes, beans or use the meat in casseroles or soups. Other tips: avoid smelling foods if odors bother you. Use plastic silverware if you have a bitter or metallic taste. Take in liquids, and use mints or hard candy to help bad taste.
Safety recommendations for those of us that are immunity impaired: Wash all fruits and vegetables well (some recommend a dilutee wash of hydrogen peroxide), Well done meats, no moldy cheese, avoid lunch or deli meats, avoid hot dogs, (unless heated to 165 degrees or more), no well water, avoid buffets.
Overall - go for healthy eating: choose a low fat diet, go high in fruits and vegetables, avoid salt cured, pickled and smoked foods and meats, limit grilled meats, avoid or strictly limit alcohol. For protein, focus on fish such as salmon, tuna or catfish. Tilapia may also be OK. Trade off with chicken and turkey, and limit red meat to once a week.
HIGH CALORIE, HIGH PROTEIN FRUIT SMOOTHIE
1 Cup vanilla Yoghurt
1 Cup 2% milk
1 Medium banana
2 TBS wheat germ
2 TBS protein power (Benaprotein or Promed, for example)
Place all ingredients in blender and mix well. Pour into a tall frost-chilled glass and serve immediately. Yield: 2 - 1 ¸ cup servings. Calories per serving: 165 Protein per serving: 16 Grams
May 13, 2009. This was quite an interesting meeting! Our speaker, Dr. Troy Guthrie, not only treats cancer patients, but is also involved in research trials for new drug therapies and regimes for cancer patients. As such, he is clearly on the leading edge of what is new and what is coming in the way of treatments for Multiple Myeloma as well as other forms of cancer. He presented two research cases, to illustrate how patients are selected for specific trials. Interestingly, if one is involved in one of these trials, and for various reasons has to drop out, (e.g. adverse reaction to the drug, or unacceptable side effects) the patient may drop out of the trial, but is still followed, to see what transpires AFTER leaving the test.
The second item of interest was some information and opinions on osteonecrosis of the jaw. In his opinion, it may be that there are other causes of this condition in addition to or instead of Arridia and Zometa. He cited past cases where a particular conclusion of a medical problem was mis-applied to a particular source. The most commonly known example of this situation is the furor over silicone breast implants, which were later proven to be perfectly safe. His research leads him to believe that perhaps 3% or so of patients taking either of the two most popular biophosphinates will contract osteonecrosis of the jaw. He also confirmed that infusing the drug SLOWLY is highly recommended. When asked why Novartis began selling these two drugs, knowing that osteonecrosis was a potential side effect, he replied that when the drug was introduced, life expectancies for Multiple Myeloma patients were short enough that the patient would more than likely not live long enough to contract osteonecrosis of the jawbone. Interesting!
March 11, 2009. Our March meeting featured Linda Gordon, a caseworker from Mayo Clinic. Linda emphasized the importance of having a Living Will, a Health Care Surrogate, and a DNRO (Do Not Resuscitate Order). She pointed out that a Living Will is not sufficient without a DNRO, and that DNRO's are State-sensitive. So a Florida form will not be accepted in, for example, Georgia. Interesting point!
She also recommended a health care bracelet or necklace if there are certain aspects of your disease that are critical for an ER to know, and emphasized that if ANY of us go to the ER, we should make the staff immediately aware that we have Multiple Myeloma and are immunologically compromised. It is important to get you away from the other ER patients who may have colds, the flu etc.
Those of us who need caregivers may want to contact the following for advice and services as needed:
February 11, 2009. Our meeting on February 11 was a first! Standing Room Only! Our speaker was Dr. Lawrence A. Solberg, Jr. PhD, MD., a professor of medicine at Mayo Clinic, and a general hematologist for patients with blood diseases at Mayo Clinic.
Before a group of 25 patients and care givers, Dr. Solberg gave a brief Myeloma 101 presentation followed by a question and answer session that was quite enlightening for everyone. We thank him for sharing his time and expertise with us.
It was an extremely enlightening presentation, ranging from the drugs that are now being used, to the values on our blood work, and what they mean. While Dr. Solberg had a prepared speech, the first thing he did was go around the room and see what questions and concerns were raised by the group. He then weaved answers to all those questions and concerns into his presentation. It was a most satisfying and educational meeting.
January 14, 2009. Speaker: Andy Lebkuecher -- International Myeloma Foundation coordinator for the Southeastern US support groups.
December 18, 2008. Holiday party.
20 members, care givers and friends of the Support Group enjoyed an excellent dinner to celebrate the Christmas Holidays. The party was held at the Ocean Club at Ponte Vedra. Hope to see more of you at our next soiree.
November 19, 2008. Speaker: Dr. Robert A. Joyce, MD Hematology and Oncology Consultant. Discussed advances in research in myeloma and answered many questions.
October 8, 2008. Speaker: Dr. Stephen Aims, a clinical psychologist at the Mayo Clinic - Jacksonville, to discuss mental health issues affecting patients, caregivers and family members.
September 2008 Meeting was Cancelled. Regular meetings will resume in October.
August 13, 2008. Conference call session with representatives of the IMF's HOT LINE to discuss recent events in Myeloma treatment, research and possible new medications becoming available in the near future.
August 2, 2008. Summer picnic at the Sawgrass Beach Club pavilion. READ MORE
July 9, 2008. Speaker: Greg Tsales, Pharma Representative for CuraScript, discussed how specialty pharmacy companies operate and how patients who need help covering the cost of their drugs can access certain foundations, etc. Additionally in attendance were representatives from Celgene, a distributor of specialty pharmacy drugs who also discussed the patient support network that their company has in place to help patients with technical questions regarding the oncology drugs that patients are taking.
June 18, 2008. Speaker: Larry Han, AP, internationally renowned acupuncturist, discussed acupuncture as an alternative therapy to pain management. He provided options to consider, which included both Western Medicine and Traditional Chinese Medicine ("TCM"), once a full evaluation of the patient is conducted.