Second Live On-Air Myeloma Support Group Meeting – Discussed Q/A

We are delighted that Cure Talk Panel Show conducted its’s Live On-Air Myeloma Support Group Meeting on June 27 2013. This was the second meeting of our monthly Myeloma Support Group Meetings started in May 2013. The aim of our meetings is to help all of you who do not have a support group near your home.  Our support group leaders for June were Pat Killingsworth, Sue VanDuyn and Cynthia Chmielewski.

Listen to the entire talk here.

I’ve listed below all the questions taken up during our meeting.

Q- What do they think about transplant and do we need it when so many new drugs are coming out?

Sue said this is a common question from newly diagnosed people. She went to add that though transplant is still considered best treatment for myeloma, it doesn’t mean all myeloma patients get to have it,  as each case is different and some patients simply might not be eligible for a transplant. There are new drugs which might take care of your disease. Overall, she suggested that having a really strong relationship with your doctor and to educate  yourself as best as you can about various options available before arriving at a final decision on transplant. She summed up saying there’s no one right answer to the question and the decision has to be taken such that patients don’t regret any decision they  take for themselves. So, educate yourself as best as you can and take the decision that’s best for you- Be your own best advocate!

Pat added that one of the best things for myeloma patients is to have a good team including specialists and caregivers! However, one need not go to specialists right away, they can do so when they’re considering a therapy change. This is specially important for all such patients who might have to travel far to see a specialist.

Q- Has anyone been faced with frequent and pervasive infections such pyelonephritis?

Pat answered that pyelonephhritis was an inflammatory disease of the kidney resulting from urinary tract infection. This spreads because of low ANC (Absolute Neutrophil Count) of myeloma patients. He quoted the IMF website and WebMD as sources of  information regarding regular antibiotic treatments for pyelonephritis.

Q- Best ways of treating neuropathy in feet.

Cindy answered that with neuropathy she felt that there’s no one way to treat neuropathy. As Cindy herself was fortunate not to have neuropathy, she spoke on the basis of what she’s heard from other patients in her support group. She suggested visiting Dana-Farber Cancer Institute and International Myeloma Foundation for therapeutic suggestions and protocols for neuropathy. She mentioned about some of the patients in her support group having benefited from drinking tonic water. She suggested asking your doctor and taking his/her help and educating yourself to take care of neuropathy.

Sue too suggested visiting Dana Farber website. Pat mentioned about some new developments in neuropathy treatment and mentioned that he’ll be soon publishing a blog on new drugs for treating neuropathy. We’re looking forward to your blog Pat!

I’m sharing with you DFCI Neuropathy Regimen from IMF website which you can take to your doctor.

Q- I read that amitriptyline (Elavil) has anti-myeloma properties with Velcade in pre-clinical studies.  Even if a person isn’t clinically depressed, would it be worth looking into?

Pat said that Velcade is known to react with many drugs and may be with the anti-depressant Elavil too. He considered wait and watch approach as the best thing to do to see if Elavil-Velcade would be worthwhile!

Q- Is a watchful waiting approach still standard protocol for smoldering myeloma or myeloma with no C.R.A.B symptoms? What if there are no C.R.A.B symptoms but a severely compromised immune system?

Pat referred to the working group of IMF who suggests that watchful waiting is still the best thing to do for smoldering myeloma. He informed about number of new clinical trials and research studies going on to try and hit smoldering myeloma before it gets active. Smoldering myeloma patients have a compromised immune system which comes as first symptom for smoldering myeloma but it’s still best to wait and go drug free as long as you can.

Q- When thalidomide, revlimid and pomalyst, the ides, do not work; and velcade no longer works…what are the options?

Cindy answered that the idea is not to lose hope and there are a lot of new drug combinations that can be tried out. She suggested using myeloma matrix on IMF website. She quoted Dr. Robert Z. Orlowski of MD Anderson Cancer Research Center, saying not to forget older myeloma drugs and ongoing clinical trials. She advised seeing local myeloma specialists and looking up IMF and MMRF for details.

Pat mentioned about TrialX to find information about ongoing and upcomig cancer clinical trials in your area!

Q- At the moment I’m taking Thalomid and receiving Velcade and Cytoxan by IV. My results have been very good so far after just 1 month. Have other patients had same results using this combination. Thank you for this forum.

Pat answered yes to this question and said that it’s good that the treatment is working well.

Q- What are the advantages and disadvantages to a second Stem Cell Transplant?

According to Pat, the rule of thumb seems to be that if your first transplant lasts 3 years, the second one will last year and a half.  If you’ve had good result in first transplant then you could expect good result second time too but its’s just that the second one might not last as longer as your first one.

Q- Does regular blood work accurately show remission, or are there other means for tracking it?

Cindy said that blood tests are good for most patients to show remission. She mentioned about various tests to check for serum Immunoglobin levels and tests like kidney function test, for regular myeloma patients and tests like bone-marrow biopsy for non-secretory myeloma patients. She emphasized that the best thing to do is to talk to your doctor and educate yourself as best as you can about the tests being done and the reason for those tests.

Q- My husband is in hospital in UK undergoing stem cell transplant. I’m concerned that he will not be offered maintenance therapy following this aggressive treatment, merely follow up and further chemotherapy when he comes out of remission. What are your views on this strategy?

Pat said that he understands that maintenance therapy after transplant was  not a standard procedure in UK, but suggested that even that approach could work. This would be because when the myeloma comes back after transplant, it has not seen any drugs before and hence would be more sensitive to them. So, maintenance therapy or not, you roughly end up at the same place.

Q- What annual tests are the most effective to track MM?

Cindy said that the frequency and the type of tests would depend on the characteristic and the progress of your disease. The best thing that she does in this regard is to keep a record of all the tests using myeloma manager tool from IMF website, and keeping all the information readily available, and getting information on why each test is done. This really helps keep a track of your disease and comes in really handy if you would lie to go for a second opinion.

Q- More information on how nutrition and supplements are having an impact on MM.

Pat mentioned about Dr. Durie’s blogs about nutrition on the IMF website and Danny Parker’s blog on Pats website.

I would suggest you also read about Eating Healthy with Cancer, our CurePanel Talk on cancer and nutrition.

Q- Any secrets for keeping at bay the skin side effects (from the disease and from the medicines) ?

Pat talked about Dr. Robert Z. Orlowski of MD Anderson Cancer Research Center, mentioning in one of his interviews with the Cure Panel, talking about gradually lowering the dose of Revlimid(cause of most skin rashes side effect) to get rid of skin rashes. Here again ,the best thing to do is to openly talk about all that you feel regarding your disease with your medical team and get their views on it.

Q- I was just diagnosed with Multiple Myeloma.  I have had some bone loss in my lower spine area, slightly anemic but no other symptoms at this time.  I had my first appt. with a hemotologist at Mass General Hospital in Boston.  He is recommending a clinical research study using a combination of lenalidomide, bortezimib and dexamethasone followed by lenalidomide maintenance.  1/2 of the group will receive autologous stem cell transplantation and 1/2 will not, it is luck of the draw.  I know there are many treatment options out there and am not sure the best way to go about knowing which is the best one for me.  It seems as though stem cell transplantation is very successful although not without risks. How can I go about deciding the best course of treatment and whether it is better to use a standard treatment option or a clinical trial.

Pat felt that in this case it would work for the patient on either side of the trial.

Sue said the underlying theme here was to have a doctor that you trust. In this particular case however she felt that it would make sense going in on either side of the trial.  In cases where doctors are involved in clinical trial, they might ask patients to go for the trial for their own interest, and it’s best in such cases to get a second opinion. She asserted yet again to empower yourself, find about as much as you can using all available resources, and thus Be Your Won Best Advocate!

Q- Do many people not take Dex, because of side effects, and if so, what are some of them experiencing?

Pat talked about some statistics available for Dexamethasone and its efficacy in combination with other drugs which indicate that Dex is much more effective in combination with drugs like Revlimid and Velcade than Dex alone. However, for people having severe side effects from Revlimid or Velcade, they could shift to Kyropolis or Pomalsyt, which are the two new drugs in the market.

In summary: Get to know as much as you can about all aspects of your disease, have a strong relationship with your doctor, have a doctor you trust. Thus help yourself Become an Empowered Patient and Be Your Own Best Advocate!

It was very informative and inspirational meeting with our support group leaders. We thank Pat, Sue and Cindy for sharing their views and answering partcipants’ questions. We also thank all our listeners and participants for being a part of this meeting and sharing their myeloma journey with us.

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  1. Pingback: Know Your Legal Rights and Become an Empowered Myeloma Patient on Cure Panel’s Live On-Air Myeloma Support Group Meeting with Anya Prince of CLRC | Cure Talk

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