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Lots of myeloma related odds ‘n ends continued…

Home/Side effects, Supplements/Drugs, Tips, Transplants/Lots of myeloma related odds ‘n ends continued…

Lots of myeloma related odds ‘n ends continued…

More odds and ends to share…

One of our regular readers and contributors named Mark, passed-along these helpful suggestions after learning I was having issues with nausea again.

Pat,

Sorry to hear of your digestive issues.  Have you tried using Culturelle Lactobacillus?  I am on a Study using it and I think it works.  The only time I have had any feeling of nausea since my Allo (and it was mild) was when I was taking an antibiotic to clear up a skin rash.  The study ends for me in about 2 months – that will be one year since my Allo.  I am going to continue taking it when the Study ends – Mark

After emailing Mark back, letting him know that I was not familiar with that supplement, this was his response:

It is an over the counter probiotic.  I think it is like $20 for a months supply at the store – I am going to buy it once my trial is over.  The main part of the study I am on is to see if patients that undergo Allo transplants have less infections and less Gut GVHD.  I saw one where they are going to give it to patients for Auto and Allos to see if it helps prevent mucositis.  It is not a cure for nausea, but it was noticeable that I had some nausea when the amount of it was lessened due to my use of antibiotics (Doxycycline).  It usually mentioned to prevent diarrhea – another GI problem.  I have seen references to it being possibly helpful to patients on Chemo.  I have also seen references to asking your Doctor if you should use it if you have a weakend immune system.  Mine was as weak as it could get when I first started taking it – I was on 5 mg of Prograf daily – that is a large amount.  Here is the link to Medline about it. 

http://www.nlm.nih.gov/medlineplus/druginfo/natural/790.html

Here is the company website.  It mentions that 70% of the immune system is in the digestive track.  No wonder all of us Cancer patients constantly have GI problems and are prone to be sick.  Fortunately I only had one bad cold since my Allo but it took over a month to go away.  As a side note, that is why it should be obvious that an Allo transplant will never show any benefit until 5 years out.  My immature immune system cannot even fight off a cold effectively – relapsed cancer cells are just a little tougher to kill!

http://culturelle.com/

Much appreciated, Mark!  Reader contributions add so much to this site, don’t you think?

Here is an interesting question I received by email earlier this week:

Hi pat,
This is abdul, I too was diagnosed with MM back in 2008.  With chemotherapy and maintenance dose of revlimid and dex is keeping mine under control.

I recently joined Gold gym. And have been using sauna and stem bath there.  Are there any problem with that for a MM patients that you or someone know?

I do enjoy using them…. but feel tired on that day afterwards.  Can you please post this on your blog and ask your readers to share their experiences with saunas and steam baths?
Thanks
Abdul

Of course, Abdul.  I responded this way:

I’m not a doc, but I don’t see any problem with it…  Germ issues maybe.  How are your ANC/white blood counts?  Actually, sounds like a great idea!  Does it help with PN or any other symptoms?  Something new to add to my “might help” list!

Anyone else out there want to add their two cents worth?

By the way, Abdul was kind enough to pass-along this information and a link to this website from his native India:

Ayurveda is the world’s oldest known medical science, which originated in India over 5,000 years ago. The main source of this ancient knowledge is the Vedas or the divine books of knowledge propounded by spiritual rishis (sages) in India. Ayurveda is not simply a healthcare system, but a form of lifestyle adopted to maintain perfect balance and harmony within the human existence…

Dr. Partap Chauhan,  Director of  Ayurvedic Medicine 

http://www.jiva.com/ayurveda/aboutjiva/jiva-on-tv.html

Fascinating!  So much to learn–and so little time!

Finally, I have been stressing how vulnerable multiple myeloma patients with compromised immune systems can be following years of ongoing treatment, using my recent bouts with melanoma and squamous cell carcinoma as examples.

Apparently Dr. Maurie Markman, Editor in Chief of Oncology Live–and myeloma researchers in general–agree with me:

Noteworthy Research Spans Range of Malignancies

Maurie Markman, MD   
Risk of Second Cancers in MM Therapy Examined

It is well recognized that multiple myeloma (MM) itself and the therapy employed in the management of this cancer have the potential to be associated with second malignancies. In an effort to determine the magnitude of this risk, and any changes in such risk that may have resulted from the introduction during the past decade of increasingly effective antineoplastic strategies to treat the condition, investigators examined patients with MM contained within the large Surveillance, Epidemiology, and End Results database from the years 1973 to 2008.1

Specifically explored was the relationship between the risks of developing a second cancer after a diagnosis of MM during particular time periods that corresponded to the introduction of novel therapeutic strategies (eg, thalidomide, bortezomib, lenalidomide). The primary endpoint in the analysis was the documentation of a second malignancy at least 2 years after the diagnosis of MM. The only secondary cancers excluded from this evaluation were in situ malignancies (other than bladder and breast) and myelodysplastic syndrome.

The analysis, which included more than 29,000 patients, found an association between the risk of secondary malignancies and older age, male sex, and previous radiation or surgery. The researchers also found a greater risk of a second cancer during the most recent time periods analyzed.

Although this report raises the question of the immunosuppressive effects of the recently introduced potent novel therapeutics and the potential risk of the development of an additional cancer, it is important to note that with more effective treatment, patients also live longer and are therefore at greater risk (due to length of survival) to experience such an unfortunate event. Further research into this question is clearly indicated and the long-term consequences of newer therapeutic agents need to be carefully monitored.

I took the liberty of highlighting the key point from Dr. Markman’s article.  There is no question that chronically low blood counts and/or ongoing exposure to chemotherapy puts a large majority of myeloma survivors at risk of developing secondary cancers.  One more cross for all of us to bare, I guess.

Fortunately, frequent exams and ongoing medical care help limit the risks of a new cancer becoming more dangerous than the one we are already living with.

Sorry to end on such a down note.  At least the percentages are somewhat low that any one of us will develop a secondary cancer.

Feel good and keep smiling!  Pat