To (continue) chemo or not chemo - that is the question!

[Quester]

Hi folks, I am new to the forum and relatively new to MDS. After about a year and a half of feeling ill, having repeated fevers, tiredness, chills, losing weight, low WBC, RBC, and Platelet counts etc. and not being able to find out what the problem was, I finally got a Bone marrow biopsy (just to check that it wasn't cancer!) and was diagnosed with MDS.

The Oncologist said it wasn't serious and we would just watch and wait to see how things progressed over the next year or two - well that very weekend I went down with a really bad fever and the Doc. decided he would put me on Vidaza infusions as a result. 6 rounds of 7 consecutive infusions each month was the plan and I have completed round 1, with round 2 about to start next week.

Long story short, here's my issue. My wife and others have been consistently pointing out that it is likely that the chemo itself causes more harm to the body than the cancer does, and that a lot of what is wrong with us these days can be boiled down to our lifestyles and what we eat in particular. If I were to change my diet (more organic produce, etc.) and increase my exercise, it is probable that I would get better naturally, but if I continue with the chemo I am likely to get progressively worse (statistics showing very low cure rates for chemo, versus alternative natural remedies).

Chemo isn't a particularly attractive proposition anyway, and as we all know it both costs a bomb and will not cure (just delay) the cancer - only a BMT will do that!

However, I am torn between the two options - if I refuse further treatment will I effectively be 'cutting off my nose to spite my face' since both the Hospital and the Insurance Co. would most likely decline to assist in the future if I changed my mind later? On the other hand, if I continue the chemo, I could be destroying any hope of a natural recovery later on, should the chemo fail to halt the cancer (or indeed make it worse). Not only that, but to continue with chemo puts a heavy financial burden on my family (insurance doesn't pay all the bills, and insurance only lasts as long as one's employer is prepared to put up with you being sick, which in the USA isn't usually more than 12 weeks - only because of the FMLA I might add!).

There is a lot of confusing information out there and part of me wants to believe in the chemo route, although survival rates do seem to be pretty low as to warrant the expense and the discomfort. The other part of me thinks there could be something to the alternative lifestyle route that makes it worth a shot, even though there are many 'crackpot' solutions out there that give Alternative medicine a bad name.

This is a very informed group, so I would really appreciate hearing your opinions.

Many thanks

[bailie]

Vidaza saved my life. I was fine and feeling great and six months later my counts were spiraling downward. I was told that I might live another 6-7 months without treatment and it wouldn't be a good 6-7 months. The Vidaza started working for me after the 2nd cycle and brought my counts back to normal so I could have a transplant.

I think your thoughts of a "natural recovery" are a one in a thousand chance, but miracles do happen. "Lifestyles and what we eat in particular" isn't going to change your chromosome problems. The reality of the situation is that if they put you on Vidaza your MDS is serious enough that "to change my diet (more organic produce, etc.) and increase my exercise, it is probable that I would get better naturally" is not going to happen.

For me, if I would have waited any longer before going on Vidaza I don't think I would be alive now. It is crucial to attack MDS as soon as possible while a person feels reasonably healthy. If you get "behind the eight ball" with MDS it will almost always overwhelm.

This is just my opinion and I think it is realistic. I will be interested in what others think. The research is pretty clear that a transplant is the only known cure for MDS. Above all, I wish you the best as you decide your course of action.

[Annettec]

Bailie, you took the words right out of my mouth. Best to follow the doctor's advice. Good luck

[riccd2001]

Doctor's advice notwithstanding, it's really your consideration of latest results, treatments and what is best for your age.

My low-risk MDS journey began in February 2008 after a second BMB confirmed what I would be dealing with this depressing form of blood disorder (or cancer, if you like).

Rather than watch and wait my Doc and I agreed we would monitor Hgb every three weeks and transfuse PRBCs according to a 90/80/70 sliding scale. Almost 7 3/4 years later we're still doing the treatments every three weeks but with an Hgb scale of 85/75/65.

I never 'qualified' for Vidaza owing to low blasts. And now that I've transformed to AML, Doc says I should go with Vidaza but I'm not willing to risk it now that I'm 72. There are over 20 chemo treatments available today for AML, but I'll continue my so-far successful routine. I do have a hope for a clinical trial for AML using Avocatin B that eliminates AML stem cells which may soon be available. Good luck, Ric

[bailie]

Ric, I am wondering why you said, "I'm not willing to risk it now that I'm 72" when referring to Vidaza? What "risk" are you talking about?

[Marlene]

I would not look at this as an "either/or" situation. It's never too late to do things to improve your overall health where you can even if you choose to continue with Vidaza.

There are nutritional insufficiencies that can contribute to blood disorders. Fixing them can be helpful. If you are lacking key nutrients like B12, folate, copper, iron and D, all the drugs in the world will not provide the building blocks for blood production. Drugs do deplete nutrients. So it's not uncommon to do both chemo and nutritional support in hopes of a better outcome. Even if restoring nutrients does not correct anemia, your body is in a better position to deal with the issues that arise from chemo and MDS. Sometimes, the best you can do is to keep the disease stable.

[Cheryl C]

Well said, Marlene! I totally agree with you. We can do a lot to help ourselves stay well in spite of MDS, and to perhaps help to mitigate some of the effects of therapies like chemo.

Quester - You are wise to consider the chemo regime carefully. Only you can know how you cope with strong drugs and there is no doubt that the side effects of Vidaza can be debilitating for some. See http://chemocare.com/chemotherapy/drug-info/Vidaza.aspx It's a regime which will change your daily lifestyle as you are no doubt discovering. For me chemo or a transplant will only be considered if my blast count increases significantly again.

I know you said your CBC results are low. How low? Do you have any blasts? It's important to monitor your own results carefully. Some of us record them in a spread-sheet.

[riccd2001]

Originally Posted by bailie

Ric, I am wondering why you said, "I'm not willing to risk it now that I'm 72" when referring to Vidaza? What "risk" are you talking about?

An early death!

[bailie]

I have never heard of Vidaza causing an "early death". I have heard overwhelming evidence that it prolongs life with very few side effects. It has been more effective than almost any blood related drug on the market and has been proven effective for a long period of time. Do you have any evidence that it causes an "early death"? I would be interested since I am in my 13th month of using it.

The Myelodysplastic Syndromes (MDS) Foundation says a study published this week in the Journal of Clinical Oncology concludes VIDAZA (azacitidine) “prolongs survival and is well tolerated” in patients with acute myeloid leukemia (AML) - an aggressive form of leukemia that in many cases progresses from MDS. The study looked at older patients with a median age of 70. These are patients who have had “no truly adequate treatments,” however the study found that half of the patients treated with VIDAZA survived at least two years, compared to only 16% of patients who received conventional care. Nearly 13,000 AML patients are diagnosed each year in the United States.
The study also found that VIDAZA helped reduce the need for blood transfusions that are often required in AML. 41% of patients on VIDAZA achieved transfusion independence, compared to only 18% receiving conventional care. VIDAZA treatment also significantly reduced the number of days spent in the hospital, and reduced serious infections.

The findings come from a subset of an international study of VIDAZA that previously demonstrated improved survival in patients with higher-risk MDS. Both MDS and AML are malignant conditions of cells in the bone marrow. Previously, the National Comprehensive Cancer Network recommended VIDAZA and DACOGEN® as treatment options for AML patients over 60 years old.

[DanL]

Quester,

I am not sure which person responded before me "why not both" to the chemo and diet options, but given my experience i would say both is a good option as well. I have had Vidaza on two separate occasions - 2 or 3 cycles the first time and 6 the second. Vidaza does tend to knock down blood counts a little duriing the beginning of each cycle and into the first week or two, then blood ounts tend to reover. In terms of quality of life, Vidaza is a relatively quick injection, and had very little impact on my energy level. Diet and exercise certainly have had some impact for me a well. I think that getting to a weight where you are feeling good about yourself and that you are in balance helps with chemo and overall well being.

In the end, I too ask the question, why not both? ''''''

DanL

[bailie]

I am in complete agreement. Exercise, eating well and getting the right amount of sleep/rest are very important in conjunction with Vidaza, or any drug. It is not a "one or the other" project if one wants to maximize quality of life. The characterization sometimes presented is that by using Vidaza somehow diminishes "quality of life" in favor of "quantity of life". That is a misunderstanding that should not be promoted. Naturally in a few cases, as with any medical procedure, there might be adverse effects, but there are very few with Vidaza. The real test for Vidaza is if a person is fortunate to be in that 40-50 percent who respond favorably to the drug. If a person is not in that group the next best alternative(?) is always available.

[Quester]

Thanks to everyone for the great responses. Even having not seen your replies and experiences until now, I was coming around to the idea of "doing both" myself - especially as I am currently reading "Anti-Cancer, A new way of life" by Dr. David Servan-Schreiber.

The good Dr. was a neuro-scientist (researcher) and physician himself who discovered he had brain tumors. His book is all about changing your lifestyle and diet to a healthier one, at the same time as continuing with modern medicine such as chemo and surgery, but he writes it from a personal, memoire like perspective. Quite touching in parts and not too scientific to follow, he did at least finish the book before the Cancer finally won the battle.

The main premise of the book is that we all have cancers within us, it is just that our immune systems normally keep them from developing into anything more than a pinhead at best. When the immune system gets compromised, then the cancers are free to develop and those cells feed on the sugars and other 'nutrients' in our food. It is the modern (Western) diet and lifestyle that is at fault here (many types of cancer have quadrupled since WW2), and the more we can do ourselves to get back to a more natural, less processed diet and a less stressed lifestyle, the better off we will be.

To chemo or not to chemo? The answer is yes, but in tandem with natural remedies and lifestyle changes - if we fight it on two fronts, we've a much better chance of defeating the enemy (cancer) than we have with just the one weapon alone.

[Cheryl C]

Sounds like a wise decision, Quester.

Just a couple of hints on the wellness aspect. If you're low on white cells, keep off foods containing cane sugar, maple syrup, malts, etc and especially sugar/dairy combinations. I personally keep off dairy too. Honey is OK, especially medi-honey. Stevia is also good. As soon as you feel a sore throat starting, knock it with big doses of Echinacea, Astragalus or other immune boosters.

Have you had your Vitamin D, B12, etc tested? For example if your D is low, it may be affecting your platelet levels.