[bodumene]

Newly diagnosed, but considering not having treatment

by bodumene on Sat Feb 04, 2017 7:15 am

Hi All,

I'm new to this forum, and somewhat new to multiple myeloma. I have had MGUS for at least three years. Blood numbers alone, though increasing each year, are probably not high enough to suggest treatment. But recently, because of some lytic lesions and compression fractures in my lumbar vertebrae, the oncologist thinks we ought to begin treatment for multiple myeloma. It will be Revlimid, Velcade, and dexamethasone along with Zometa infusions.

I am 80 years old, and have accepted that life is finite and am not worried about dying. I have pretty much lived my life, and although I would not end it by choice, I am OK with it ending. How­ever, what I am worried about is a miserable quality of life due to the side effects of these drugs. I have researched them pretty thoroughly and know what they can do. (Since I have not started them yet, I don't know exactly how I personally will react.)

My oncologist seems to feel he can keep me alive "until a piano falls on my head", meaning until something else kills me (probably a heart attack or stroke, given my family history). He seems to feel ten years is a reasonable estimate. But I am wondering whether it is worth all the misery that the side effects can have in order to prolong life. I am even wondering whether I should not even bother with treatment, and then go on palliative care when the multiple myeloma symptoms become severe. Right now, I have no symptoms except for some limitation of activity while the compression fractures heal.

Any thoughts? Do some people have minimal side effects? I suppose it makes sense to see what side effects I will have before deciding, but it appears most people don't escape them. Anyway, thanks for any advice.

[kshornb]

Re: Newly diagnosed, but considering not having treatment

by kshornb on Sat Feb 04, 2017 10:07 am

Hi bodumene:

This topic has been discussed many times in this forum, but this is my first posting regarding this topic.

There can never be a more personal choice to be made for us (cancer patients) as to whether take treatment or not, or even what type of treatment to try (holistic vs traditional or a combi­na­tion of both).

I have been living with this cancer for only 1.5 years, I was diagnosed at 52, so I am in a much different time in my treatment and life than you are, but I can honestly say that given my poor tolerance for Revlimid, I would choose no treatment, if it were my only choice.

I have been through 8 courses of induction treatment with Velcade, Cytoxan (cyclo­phos­phamide), and dexamethasone), a stem cell transplant, and have recently started a Revlimid maintenance program. I handled the induction well, and even the stem cell transplant, and am now in stringent complete response (sCR). All very good, but if Revlimid were my only treat­ment choice now, I would choose to forgo any further treatment.

I guess what I am trying to say is, only you can decide if the treatment you agree to undergo (and it is ALWAYS your choice, is worth the quality of life it is providing you. You may be like many on this forum, who are on the same treatment your doctor is recommending for you, and some are hiking, biking, and living the same quality of life they had before cancer, or very close to it. Your treatment may not make you sick at all, but if it does, and you don't like your quality of life, you can always request a change of treatment, information on alternatives, or choose to stop altogether. Starting treatment does not preclude you from stopping at anytime.

I wish you the very best, these decisions are never easy, but don't ever feel that you have to "explain" your choice or choices to anyone. It's your life, and you should be the one to choose the way in which you want to live it.

Best of luck,

Kathleen

[Nancy Shamanna]

Re: Newly diagnosed, but considering not having treatment

by Nancy Shamanna on Sat Feb 04, 2017 10:32 am

Hi Bodumene,

I guess that in a way you could say that the side effects of the drugs might be a lot to put up with. However, didn't you experience a lot of pain with the compression fractures? Pain can be controlled with medications, but if you were to take treatments, halt the myeloma and not have more bone damage, I would think that would be a better quality of life than letting the myeloma cancer increase.

When I had compression fractures, I was younger than you by more than 20 years. I would go through a lot of treatments not to be in that situation again! Of course, it is your choice, and most of us younger patients would be happy to reach the age of 80. That doesn't mean that you can't have a few more good years, though!

[blueblood]

Re: Newly diagnosed, but considering not having treatment

by blueblood on Sat Feb 04, 2017 10:44 am

Hi Bodumene,

I'm not sure I can offer much help with your situation due to ours being so different. However, you need to prevent further compression fractures if at all possible. Pain management for my compression fractures wasn't very effective. Treating the multiple myeloma was.

Go to a myeloma specialist and dial the medication down to minimize side effects.

[Mark Pouley]

Re: Newly diagnosed, but considering not having treatment

by Mark Pouley on Sat Feb 04, 2017 12:32 pm

That is a very personal decision only you and your family can make. I'm also younger than you, so my experiences may not be the same as yours, but I think in general you will find most patients tolerate all of the main initial induction drugs very well.

There are some cases of extreme side effects, but they are often temporary and can be dealt with by changing doses or changing medications. For me, and for others, fatigue is the only constant noticeable effect. On the flip side, the various medications are often very effective at achieving at least a good response that may last months or years. With the response often comes relief from bone pain or other symptoms you might be suffering from the myeloma.

Nothing is guaranteed, but in my opinion you should at least try the initial Revlimid, Velcade, dexamethasone (RVD) therapy before you make a decision. If it impacts your quality of life severely and you still want to consider dropping it, you can make that decision at any time. There are so many great examples of patients of all ages getting a good response to treatment, and maintaining a great quality of life I think it would be a big mistake to assume you would be one of the few people that will suffer bad side effects.

Good luck with what ever decisions you make. The community here will always be supportive.

[bodumene]

Re: Newly diagnosed, but considering not having treatment

by bodumene on Sat Feb 04, 2017 11:14 pm

Hi All,

Thanks so much for your thoughtful and helpful replies. I am impressed at the wisdom, courage, and determination reflected in your posts.

I feel very lucky to have not gotten this disease until I was old enough for it to not have a major effect on what I was doing with my life. Furthermore, apparently compression fractures can be very painful, but again, I am lucky that they never bothered me that much. Any pain was easily treated with a little ibuprofen and/or Tylenol (acetaminophen, paracetamol) for a few days. How­ever, I realize I may not be so lucky if I get more fractures.

But you see, I really feel fine, and all my blood numbers look good, so that is why I wonder why I should make myself miserable taking a bunch of powerful drugs, when I don't really care how much longer I live. I want quality of life over length of life.

However, I realize that it would be foolish, if these drugs can prevent more fractures and other really bad stuff that multiple myeloma does to you, to not even try the treatment.

So I will begin the treatment Monday. I do worry about what happens if you have a really bad reaction in the middle of the night or on a weekend. They are not going to come over and give you some drug to ameliorate the reaction. I guess even at the age of 80 I am a big baby. I'm not good with pain and I especially hate nausea and vomiting.

Sorry for rambling, and thank you for the opportunity to express my fears.

[Mark Pouley]

Re: Newly diagnosed, but considering not having treatment

by Mark Pouley on Sun Feb 05, 2017 12:28 am

The only thing I will add to my post, in response to your last, is don't assume you will "make yourself feel miserable" with these treatments. Don't think of it as "chemo" with your traditional expectations. I truly understand your concern, but you may be very surprised how good you feel even during treatment.

[mplsterrapin]

Re: Newly diagnosed, but considering not having treatment

by mplsterrapin on Sun Feb 05, 2017 2:39 am

Hi Bodumene,

Like everyone here has said, no one can make that very personal decision for you. But I think it was probably a good idea to at least try the regimen. I only speak as a caregiver, not as someone who had to undergo treatment, but you really don't know until you try it whether you will even have negative side effects. I was so worried about my husband being debilitated by the chemo, and while he did experience some fatigue, he never had nausea or vomiting or anything like that. And I imagine untreated cancer could cause fatigue or unpleasant side effects too. If you're unhappy with the way the treatment makes you feel, I hope you can talk to your doctor about changing it or taking something to ease the side effects.

Also, in response to your fear of experiencing nausea after hours when you can't see a doctor, they should be able to send you home with a prescription for an anti-emetic (anti-nausea drug) so that you have the pills and can take them right away whenever you need them. They always have given my husband those when they tried a new regimen, just in case, so I would definitely ask if they don't offer.

Best of luck.

[Wobbles]

Re: Newly diagnosed, but considering not having treatment

by Wobbles on Sun Feb 05, 2017 7:33 pm

I must admit that I had some doubts about treatments when I was first diagnosed with my multiple myeloma (IgA kappa with translocation t(4;14)). In my case, I was already losing a battle with two other blood cancers (one being a B-cell disorder and the other being a T-cell disorder) when I was diagnosed. I was offered treatment for the myeloma with the possibility of having a stem cell transplant down the road.

My first instinct was to hold off on making a decision until I had a better sense of how I wanted to proceed. I do not like feeling of being rushed when making important decisions. It took a few days for my jumbled thoughts to settle down. Also, I can honestly say that some of the people on this site helped me focus my mind on the matters that I was facing.

In the end, I thought there were two key issues upon which I should base my decision: longevity of my life and quality of my life. I quickly decided that treatment would likely extend my life. That part was easy. However, would it impact my quality of life? Here, it is not so cut and dry. Like you, I was concerned about the “side effects”. Once I realized that having no treatment would badly affect the quality of my life, I decided to go forward with treatment.

Fortunately for me, it has worked out reasonably well. My cancer burden from my myeloma has substantially decreased and I have even had an improvement in my anemia.

My advice is to consider carefully all the possible causes of poor quality of life. "No treatment" may be worse than "treatment." This is something you can discuss with your doctor.

Good luck,

Joe

[Mike F]

Re: Newly diagnosed, but considering not having treatment

by Mike F on Mon Feb 06, 2017 2:25 pm

I'll add my $0.02, based on my experience.

I was treated with Revlimid and dexamethasone, did a stem cell transplant, and have been on Revlimid maintenance now for close to four years. This is just me, of course, but the Revlimid has had virtually no negative effect on my quality of life. The dexamethasone was another thing entirely, although the effects were manageable.

As things stand now, you're doing pretty well, Bodumene, and I don't blame you for wanting to maintain that status. The problem is that the myeloma probably won't just kill you one day. It's usually a pretty long, slow progression with bone problems, kidney failure, infections such as pneumonia, etc. If you can keep that from happening with a treatment that you tolerate pretty well, then it might be worth thinking about. Only you can make the decision, and I greatly respect and admire your outlook. It sounds like you've lived well and you don't fear whatever comes next. Just in terms of feeling good during your remaining years, though, you might think about trying one of the newer therapies. You can make it clear to your doctor that you won't persist if it makes you feel crummy and I hope that he or she would respect that. (If I were in this position, I'd probably push for prednisone instead of the dexamethasone, or maybe no corticosteroid at all.) But there's a pretty good chance that one of the newer drugs will keep you feeling better than you will feel without it.

Again, just my $0.02 based solely on my experience. Best wishes for you!