Hi All,
Again, thank you for all your responses, which are helpful beyond what I can express. Being able to communicate with others who have traveled this road before me, and hear their experiences and advice, is truly invaluable.
I saw the oncologist today, and we have started the ball rolling. I see the PA Wednesday for a kind of introductory "class" about the drugs, their side effects and (hopeful) remedies. I have been given a prescription for ondansetron (Zofran), an anti-nausea drug, "just in case". I believe I start the drug protocol next week, after Medicare gives approval.
I have been reassured that my life won't inevitably go into the dumpsters by side effects, largely by your posts, and also what they are telling me at the cancer center. It is kind of shocking, though, after 80 years of pretty good health, to suddenly find out I have a terminal, incurable disease, even if they are able to "manage" it so that I die of something else.
I expect to communicate again with you good people as I proceed on this journey, and someday hope to be able to help those who follow. Thank you again for your information and your kindness.
Forums
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bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
Re: Newly diagnosed, but considering not having treatment
Bodumene wrote:
Yeah, I think that in oncology terms, this is "great news!". To the rest of us, it's more than a little unsettling.
Best of luck going forward! Keep us posted on how it goes.
It is kind of shocking, though, after 80 years of pretty good health, to suddenly find out I have a terminal, incurable disease, even if they are able to "manage" it so that I die of something else.
Yeah, I think that in oncology terms, this is "great news!". To the rest of us, it's more than a little unsettling.
Best of luck going forward! Keep us posted on how it goes.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Newly diagnosed, but considering not having treatment
Hello bodumene,
I started my Revlimid, Velcade, and dexamethasone (RVD) induction therapy in the middle of December 2014. I should have needed only 6 or 7 x 4-week cycles of that to achieve all the 'normal' levels of kappa and the K/L ratio. I had a flu-like infection after 4 cycles, and it caused a little setback, and I ended up needing a total of 9 cycles instead. My oncologist stopped the dex after 3 more cycles, and I started getting the Velcade rash within 10 days on the 15 mg Revlimid without the dex. After a few different dose levels of Revlimid, I have been doing well on an alternate day 15 mg Revlimid for the past 4 or 5 months.
I was diagnosed with the IgG kappa non-secretory multiple myeloma because of the high protein level in the urine. Further investigation and the light chain tests showed that my kappa was 870 and rose to 1070 mg/L and the bone marrow had 30% monoclonal cells, as I understood it. Nothing abnormal in my cytogenetics.
My oncologist seems to have followed the mSMART guidelines which recommend only a stem cell harvest after induction, for a patient like me (standard risk). He did prescribe only a 20 mg weekly dex (more than adequate for the effective chemo and tolerable for my 125 lb. - 130 lb. frame) and a Revlimid dose of 15 mg daily for 21 days and 7 days off. This was quite tolerable for the first 5 or 6 cycles, but things got worse with each cycle thereafter. Towards the end of the 7th or 8th cycle, I was feeling exhausted almost all the time.
My x-rays showed only small lesions on the bones and no 'rings' and I was cleared to play golf without any Zometa. I took acyclovir to prevent shingles during the time I was getting the Velcade shots. My oncologist reconfirmed that I should not take it any more. I continue to take the 81 mg coated aspirin to prevent the clots, a side effect of Revlimid.
I was posting my experience regularly, almost weekly and then every 4 weeks during the induction and later while I transitioned to the maintenance therapy. Now I am on an alternate day Revlimid dose of 15 mg. I tolerate that quite well. My kappa and K/L ratio were in the 'normal' band till my oncologist dropped the dex. My kappa now fluctuates around 40 mg/L and the K/L ratio is normal; for about 10 months now. My oncologist is quite firm that the long-term effects of the steroids are a lot worse.
HELPFUL HINTS:
My 'diary' like posts in the "K_Shash's RVD induction therapy experience" thread are quite detailed and long but the advice I got was extremely helpful, e.g. Tracy J pointed out that Benadryl can help one sleep, particularly for a couple of nights after the dex (my oncologist told me that there is no harm in it, and I only need half an adult dose), Multibilly directed me to the post from Dan from Arizona about the 'bubble technique' to avoid the Velcade rash. This was a great 'pain saver'. There was a lot of discussion about the stem cell transplant. I have opted against it, so far. Then there were the home remedies for cramps, drinking vinegar (not for me due to the acid reflux I have) and the simple soap which I have found to be quite helpful. I keep a bar of the Ivory soap near my pillow and also in my car. A quick rub on the affected muscle with the soap seems to cure the cramps within minutes!
I had a tremendous support and valuable guidance from the Myeloma Beacon community, and I would like to do my best to pass on all that I learned to the new patients / members of this community like yourself.
I sincerely wish that you respond well to the treatment and that you achieve a stringent complete response soon. Please let us know about how things progress.
And about managing this disease and 'living with it', I am reminded of the line Hud (Paul Newman) has in the movie Hud (as I remember it):
"Life is a terminal disease! Nobody has come out of it alive!" I don't recall the exact words.
I started my Revlimid, Velcade, and dexamethasone (RVD) induction therapy in the middle of December 2014. I should have needed only 6 or 7 x 4-week cycles of that to achieve all the 'normal' levels of kappa and the K/L ratio. I had a flu-like infection after 4 cycles, and it caused a little setback, and I ended up needing a total of 9 cycles instead. My oncologist stopped the dex after 3 more cycles, and I started getting the Velcade rash within 10 days on the 15 mg Revlimid without the dex. After a few different dose levels of Revlimid, I have been doing well on an alternate day 15 mg Revlimid for the past 4 or 5 months.
I was diagnosed with the IgG kappa non-secretory multiple myeloma because of the high protein level in the urine. Further investigation and the light chain tests showed that my kappa was 870 and rose to 1070 mg/L and the bone marrow had 30% monoclonal cells, as I understood it. Nothing abnormal in my cytogenetics.
My oncologist seems to have followed the mSMART guidelines which recommend only a stem cell harvest after induction, for a patient like me (standard risk). He did prescribe only a 20 mg weekly dex (more than adequate for the effective chemo and tolerable for my 125 lb. - 130 lb. frame) and a Revlimid dose of 15 mg daily for 21 days and 7 days off. This was quite tolerable for the first 5 or 6 cycles, but things got worse with each cycle thereafter. Towards the end of the 7th or 8th cycle, I was feeling exhausted almost all the time.
My x-rays showed only small lesions on the bones and no 'rings' and I was cleared to play golf without any Zometa. I took acyclovir to prevent shingles during the time I was getting the Velcade shots. My oncologist reconfirmed that I should not take it any more. I continue to take the 81 mg coated aspirin to prevent the clots, a side effect of Revlimid.
I was posting my experience regularly, almost weekly and then every 4 weeks during the induction and later while I transitioned to the maintenance therapy. Now I am on an alternate day Revlimid dose of 15 mg. I tolerate that quite well. My kappa and K/L ratio were in the 'normal' band till my oncologist dropped the dex. My kappa now fluctuates around 40 mg/L and the K/L ratio is normal; for about 10 months now. My oncologist is quite firm that the long-term effects of the steroids are a lot worse.
HELPFUL HINTS:
My 'diary' like posts in the "K_Shash's RVD induction therapy experience" thread are quite detailed and long but the advice I got was extremely helpful, e.g. Tracy J pointed out that Benadryl can help one sleep, particularly for a couple of nights after the dex (my oncologist told me that there is no harm in it, and I only need half an adult dose), Multibilly directed me to the post from Dan from Arizona about the 'bubble technique' to avoid the Velcade rash. This was a great 'pain saver'. There was a lot of discussion about the stem cell transplant. I have opted against it, so far. Then there were the home remedies for cramps, drinking vinegar (not for me due to the acid reflux I have) and the simple soap which I have found to be quite helpful. I keep a bar of the Ivory soap near my pillow and also in my car. A quick rub on the affected muscle with the soap seems to cure the cramps within minutes!
I had a tremendous support and valuable guidance from the Myeloma Beacon community, and I would like to do my best to pass on all that I learned to the new patients / members of this community like yourself.
I sincerely wish that you respond well to the treatment and that you achieve a stringent complete response soon. Please let us know about how things progress.
And about managing this disease and 'living with it', I am reminded of the line Hud (Paul Newman) has in the movie Hud (as I remember it):
"Life is a terminal disease! Nobody has come out of it alive!" I don't recall the exact words.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Newly diagnosed, but considering not having treatment
Good luck with healing of the fractures. Fortunately, 80-year-old bones can heal as fast as a teenagers'.
At 76 years old, I've had two stem cell transplants and several treatments with different side effects. First treatment was Revlimid, which had no effect and caused peripheral neuropathy. Six years later, Revlimid is very successful at controlling the myeloma with no side effects.
Moral of the story: Everyone reacts differently to treatment and the reaction can change with time. There may be a good treatment for you with minimal side effects, a good doctor will be open minded to trying alternatives.
At 76 years old, I've had two stem cell transplants and several treatments with different side effects. First treatment was Revlimid, which had no effect and caused peripheral neuropathy. Six years later, Revlimid is very successful at controlling the myeloma with no side effects.
Moral of the story: Everyone reacts differently to treatment and the reaction can change with time. There may be a good treatment for you with minimal side effects, a good doctor will be open minded to trying alternatives.
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John dunn
Re: Newly diagnosed, but considering not having treatment
Thanks to all those who have responded, and for your encouragement.
I begin treatment this Thursday, and I have decided to approach it with blissful denial. That is, I am regarding this whole episode as a non-event! However, just in case, I have fortified myself with Miralax (polyethylene glycol 3350) for constipation, Imodium (loperamide) for diarrhea, baking soda and salt for thrush prevention, cortisone cream for rashes, Prilosec (omeprazole) and Tums (calcium carbonate) for acidic stomach, Zofran (ondansetron) for nausea, and baby aspirin for blood clots. I suppose the world, in all its capriciousness, will present me with none of these side effects, but rather one for which I have not prepared.
Nonetheless, I remain determined to ignore the dire aspects of multiple myeloma, and pretend that I am still my old, healthy self. At the moment, I feel fine, although my spinal fractures and Schmorl's nodes keep me from walking very far.
Ah, denial is a wonderful creation of the human mind. I once saw a bumper sticker that said, "If you're not outraged, you're not paying attention." I don't know about that, but if I think it should be, "If you're not depressed, you're not paying attention." At any rate, I refuse to pay attention ...
I begin treatment this Thursday, and I have decided to approach it with blissful denial. That is, I am regarding this whole episode as a non-event! However, just in case, I have fortified myself with Miralax (polyethylene glycol 3350) for constipation, Imodium (loperamide) for diarrhea, baking soda and salt for thrush prevention, cortisone cream for rashes, Prilosec (omeprazole) and Tums (calcium carbonate) for acidic stomach, Zofran (ondansetron) for nausea, and baby aspirin for blood clots. I suppose the world, in all its capriciousness, will present me with none of these side effects, but rather one for which I have not prepared.
Nonetheless, I remain determined to ignore the dire aspects of multiple myeloma, and pretend that I am still my old, healthy self. At the moment, I feel fine, although my spinal fractures and Schmorl's nodes keep me from walking very far.
Ah, denial is a wonderful creation of the human mind. I once saw a bumper sticker that said, "If you're not outraged, you're not paying attention." I don't know about that, but if I think it should be, "If you're not depressed, you're not paying attention." At any rate, I refuse to pay attention ...
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bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
Re: Newly diagnosed, but considering not having treatment
I can understand the perspective of the person who started this thread.
This will probably sound like heresy to most folks, but if it turns out that I do have multiple myeloma (I haven't been diagnosed yet), I plan to decline treatment for it.
This isn't a spur-of-the-moment notion. For many years I've thought about what I would do if I got a terminal illness, (I know multiple myeloma is not necessarily a "terminal" illness, in that, one will certainly die before one's time, and depending on one's age one may live with it to the age one would have died anyway.) But if I'm told it is likely to be a short illness, I plan to just go with it.
I'm in my 70s, and although longevity is very good on my mother's side, it's otherwise on my father's side, and I know we can't absolutely count on genetics. So I expect I'll have gone to lights-out at least within the next ten years or so. The way I look at it, what's the sense in spending those last years feeling as sick as a dog, just to try to stay alive? It's simply staying alive longer so you can feel sick longer. Makes no sense to me.
From everything I've read and heard about chemotherapy, it's pretty awful. Granted, for younger people, it's the only choice, and if I was young, I'd certainly choose it. But at my age, it seems counter-productive.
I have a friend my age who is having chemotherapy. Whenever I phone him, more often than not his wife tells me can't come to the phone, because he's just had a treatment and is too sick. He's a man who would walk a mile in bare feet to socialise with friends, but chemo has made him too sick to even hold a phone to talk with an old friend of many years! To me that's a deal-breaker.
Anyway, it's early days yet. I take the serious tests in about a week. Then, as I understand it, I still won't know results until a week or so after that. Gives me a bit of time to think about my choice. I'd appreciate any further comments folks here might have, to help me make that choice.
This will probably sound like heresy to most folks, but if it turns out that I do have multiple myeloma (I haven't been diagnosed yet), I plan to decline treatment for it.
This isn't a spur-of-the-moment notion. For many years I've thought about what I would do if I got a terminal illness, (I know multiple myeloma is not necessarily a "terminal" illness, in that, one will certainly die before one's time, and depending on one's age one may live with it to the age one would have died anyway.) But if I'm told it is likely to be a short illness, I plan to just go with it.
I'm in my 70s, and although longevity is very good on my mother's side, it's otherwise on my father's side, and I know we can't absolutely count on genetics. So I expect I'll have gone to lights-out at least within the next ten years or so. The way I look at it, what's the sense in spending those last years feeling as sick as a dog, just to try to stay alive? It's simply staying alive longer so you can feel sick longer. Makes no sense to me.
From everything I've read and heard about chemotherapy, it's pretty awful. Granted, for younger people, it's the only choice, and if I was young, I'd certainly choose it. But at my age, it seems counter-productive.
I have a friend my age who is having chemotherapy. Whenever I phone him, more often than not his wife tells me can't come to the phone, because he's just had a treatment and is too sick. He's a man who would walk a mile in bare feet to socialise with friends, but chemo has made him too sick to even hold a phone to talk with an old friend of many years! To me that's a deal-breaker.
Anyway, it's early days yet. I take the serious tests in about a week. Then, as I understand it, I still won't know results until a week or so after that. Gives me a bit of time to think about my choice. I'd appreciate any further comments folks here might have, to help me make that choice.
Re: Newly diagnosed, but considering not having treatment
The decision is yours of course, but for what it's worth, I'm 61 and was diagnosed in March of 2017. Since that time I have completed induction therapy and a stem cell transplant and I'm doing great. I expect to be in remission for a long time, and for there to be options if / when I relapse – in 10 months or 10 years. For me, at this point, it's a chronic condition, like diabetes; not the best situation, but manageable if I pay attention and take care of myself.
Even though treatment had its side effects, they were predictable and manageable. Treatment didn't slow me down all that much last summer. I went to concerts, football games, had family visit and even went on a two-week cruise on the Danube. While I wouldn't want to do another stem cell transplant anytime soon, I'd happily do another one if it was my only option. As I approach my 100 day post transplant evaluation, I can say I feel better than have in a long time. I'm grateful to my primary care doc who noticed a slightly elevated protein level and slight anemia in my blood work and referred me to a hematologist / oncologist, and to the good folks at my transplant center.
This is an odd disease that manifests differently in everyone, so you'll have to consider your options, but I wouldn't think it's not worth pursuing treatment. You'll see others on the forum who had some pretty severe disease and had good responses to treatment and are doing well. I'm sorry you find yourself in this position, but it's certainly not hopeless.
Best wishes.
Even though treatment had its side effects, they were predictable and manageable. Treatment didn't slow me down all that much last summer. I went to concerts, football games, had family visit and even went on a two-week cruise on the Danube. While I wouldn't want to do another stem cell transplant anytime soon, I'd happily do another one if it was my only option. As I approach my 100 day post transplant evaluation, I can say I feel better than have in a long time. I'm grateful to my primary care doc who noticed a slightly elevated protein level and slight anemia in my blood work and referred me to a hematologist / oncologist, and to the good folks at my transplant center.
This is an odd disease that manifests differently in everyone, so you'll have to consider your options, but I wouldn't think it's not worth pursuing treatment. You'll see others on the forum who had some pretty severe disease and had good responses to treatment and are doing well. I'm sorry you find yourself in this position, but it's certainly not hopeless.
Best wishes.
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
Re: Newly diagnosed, but considering not having treatment
Hi Milo,
My first reaction to my diagnosis was similar to yours. However, multiple myeloma isn't as devastating as the more familiar forms of cancer.
Also, the term "chemo" is a bit strong for the medication newly diagnosed multiple myeloma patients get.
I have been in treatment for about 8 months and none of the medication has made me nauseous. The worst side affect so far was fatigue during my initial Revlimid treatment.
I'm only a few years younger than you and I have responded well, as do most people who are reasonably healthy. It seems to me that most of the really unpleasant experiences occur to those who are relapsed or have secondary health issues.
My point is this: Unless you have an especially aggressive form of multiple myeloma, the first course of treatment can add several years of normal life, with very little inconvenience.
If and when things get more grim down the road, quality of life versus quantity will be an issue.
My first reaction to my diagnosis was similar to yours. However, multiple myeloma isn't as devastating as the more familiar forms of cancer.
Also, the term "chemo" is a bit strong for the medication newly diagnosed multiple myeloma patients get.
I have been in treatment for about 8 months and none of the medication has made me nauseous. The worst side affect so far was fatigue during my initial Revlimid treatment.
I'm only a few years younger than you and I have responded well, as do most people who are reasonably healthy. It seems to me that most of the really unpleasant experiences occur to those who are relapsed or have secondary health issues.
My point is this: Unless you have an especially aggressive form of multiple myeloma, the first course of treatment can add several years of normal life, with very little inconvenience.
If and when things get more grim down the road, quality of life versus quantity will be an issue.
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Newly diagnosed, but considering not having treatment
I am 65 and was diagnosed in August of 2015. I started treatment with Velcade, Revlimid, and dexamethasone. Velcade was replaced with Kyprolis after a few months and continued until the first of 2 stem cell transplants in June and October of 2016. I had good results from the transplants and followed those up with continued treatment with Kyprolis, Revlimid, and dex for about 7 months. And now I am solely on Revlimid.
Everyone reacts differently to each drug. My reactions have been relatively easy to control and I've continued to work as a church administrator. I give into the fatigue when I need to, exercise and walk 3-4 times a week, and try to stick to a healthy diet. My biggest complaint right now is that the Revlimid makes lots of food taste bad!
I guess what I'm trying to say is that each of us is different and it can be a mistake to make your decision based on how someone else has reacted to a particular treatment regimen. Doses can be adjusted as mine have been a couple of times. Good luck with your decision.
Everyone reacts differently to each drug. My reactions have been relatively easy to control and I've continued to work as a church administrator. I give into the fatigue when I need to, exercise and walk 3-4 times a week, and try to stick to a healthy diet. My biggest complaint right now is that the Revlimid makes lots of food taste bad!
I guess what I'm trying to say is that each of us is different and it can be a mistake to make your decision based on how someone else has reacted to a particular treatment regimen. Doses can be adjusted as mine have been a couple of times. Good luck with your decision.
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mrhock
Re: Newly diagnosed, but considering not having treatment
I echo the earlier comments. I’ve been in treatment since last fall, and have not had any problems with side effects. I’ll turn 69 in a couple months, so am a little younger. From my reading on this site, it shows how individualized the reaction to multiple myeloma and treatment is. Hopefully, when your results come in, you’ll consider trying whatever treatment plan is proposed. If it results in the things you fear, you can always decline. If not, then you may find that the treatment life is much better than what you currently are experiencing.
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michaelgreer - Who do you know with myeloma?: Self
- When were you/they diagnosed?: 10/25/17
- Age at diagnosis: 68
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