Hello All,
It has been just about a year since I began this thread. At that time I had just become aware of my situation, and didn't really know anything about what the effects of the treatment would be. I admit I was, let us say, "annoyed" that I had be "given" this disease, after 80 years of exceptional health, and perhaps I was resistant to handing over control of my life to a medical world I knew nothing about.
Now after a year, here is where I stand. After about 4 months of Revlimid, Velcade, and dexamethasone (RVD) treatment, the cancer had retreated significantly, and by six months, I was in "remission". The last several visits with the oncologist showed my free kappa light chain level within normal limits or very close, and I have not had any detectable M-spike for months.
As for the side effects I was worried about, there were some, but nothing that would have stopped me from treatment had I known what they were beforehand. I got some bad Revlimid rashes, but they went away quickly, especially with cortisone cream. It seemed I was getting peripheral neuropathy, so I stopped the Velcade right away, and the neuropathy subsided within a few months. I was also getting Zometa infusions, but had to have a tooth extraction which resulted in a case of osteonecrosis of the jaw. So the Zometa was stopped, and ultimately the jaw bone problems seemed to resolve.
The doctor now says I am in "super remission", but still wants me on maintenance (10 mg dex on days 1, 8, and 15 out of each 28 days, and Revlimid 10 mg on days 1 through 21 out of each 28.) I don't seem to have much negative reaction to this level of Revlimid, but the dex, even at this low level, makes me extremely hyper for a couple of days, and prevents normal sleep on the days I take it. But even sleep is not too much of a problem, since I have been prescribed sleeping pills (I need them only on dex nights).
There were some other unpleasant, but not awful side effects, some of which continue at a low level on my current maintenance dose. But the reason I am posting now is to relate to those who are in the position that I was in a year ago, when I first started this thread. I thought it might be useful to hear about my experience with treatment. I am not suggesting you try the treatment or not; as many others have said in their responses to my original post, that is a very personal decision. I guess I am glad I went though the treatment. It was far more benign than I had feared, and it is really wonderful to see my lab results now.
Best of luck to all who are faced with this difficult decision.
Bodumene
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
Thanks to the above members who responded to me. You've definitely given me food for thought. I suppose what I should do now is wait until I get my exact diagnosis, and then talk to the doctor about the various treatments he offers me.
Tough waiting to find out. Might go and sit on the beach every day till then.
Tough waiting to find out. Might go and sit on the beach every day till then.
Re: Newly diagnosed, but considering not having treatment
Milo_Minderbinder wrote:
Milo, I can't think of a better way to spend the time.
I just want to add that you always have choices. When I was stressing about possible side effects, one of my doctors told me not to worry so much about making the "right" decision. She said treatment would always involve a dialogue, and whatever I chose to start with was not set in stone. If you have unacceptable side effects, you can always talk to your doctor about the trade-offs of changing your approach. This is very much a one-day-at-a-time disease.
Bodumene - Congratulations on your remission, and thank you so much for updating all of us!
Tough waiting to find out. Might go and sit on the beach every day till then.
Milo, I can't think of a better way to spend the time.
I just want to add that you always have choices. When I was stressing about possible side effects, one of my doctors told me not to worry so much about making the "right" decision. She said treatment would always involve a dialogue, and whatever I chose to start with was not set in stone. If you have unacceptable side effects, you can always talk to your doctor about the trade-offs of changing your approach. This is very much a one-day-at-a-time disease.
Bodumene - Congratulations on your remission, and thank you so much for updating all of us!
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willow75 - Who do you know with myeloma?: me
- When were you/they diagnosed?: 2017
- Age at diagnosis: 42
Re: Newly diagnosed, but considering not having treatment
Neither can I, Willow. I can spend all day there, if I get the chance.
Thanks for your advice. There's definitely a lot I have to learn about my situation now.
Thanks for your advice. There's definitely a lot I have to learn about my situation now.
Re: Newly diagnosed, but considering not having treatment
Hi everybody,
I can't begin to describe what a great help reading this forum has been to me. I discovered the Beacon while I was researching Velcade and Revlimid for my mum.
I am from Malaysia and it is not easy to find resources here for this disease.
My mum (who will be 80 in July) was diagnosed with smoldering multiple myeloma back in 2007 and so far she has had one relapse. She has been given thalidomide and Zometa twice and thankfully she suffered no serious side effects from either treatment.
She was being regularly monitored at our local hospital and starting from approximately August 2017, the M-protein levels in her blood began increasing and by November it was at around 24. The haematologist was recommending us to start treatment again and we were told to decide between putting her on either Velcade or Revlimid.
However, in late December 2017, she started experiencing severe pain whenever she tried to stand up and her legs buckled whenever she tried to walk. She was admitted to hospital and after an MRI scan, it was discovered that she had a large tumour on her spine (T4 to T7) which had also caused a spinal fracture and also destabilized her spine. She had surgery to insert an implant to re-stabilize her spine so that she would not feel as much pain when she wanted to turn or to sit up. However, she was paralysed from the stomach downwards and is now bedridden.
The haematologist advised us to try either Velcade or Revlimid although it will not cure her of her paralysis. The doctor said not continuing any treatment whatsoever will lead my mum to have bone pain (which was described as being very severe) and also kidney failure which would require her to start dialysis.
In the meantime, she was also prescribed dexamethasone (4 mg) to reduce the inflammation of her spinal tumour, which made her constantly hungry and sweaty. Her dosage ended last Monday and she now says that she is feeling some pain whenever we lift her from her bed to the wheelchair.
I was at a total loss as to whether we should take the doctor's advice as my mum was not in a position to make a decision as she was getting easily confused and had trouble with her memory.
I could not decide if my mum should resume being treated to control her multiple myeloma or not because on the one hand, it would not cure her of her paralysis and even if the drugs worked, it would only be a matter of time before she relapsed.
I have now decided to try Velcade and she will be getting her first injection (subQ injection) this coming Monday. I finally decided to try Velcade in the hope that her eventual passing will be as pain free as possible.
Reading this forum has certainly helped to prepare me for what could possibly lie ahead and although reading the forums here can be very scary, I am also helped tremendously by the advice and recommendations from other multiple myeloma patients and caregivers as to what has helped them or their loved ones in reducing the side effects of treatment.
I can't begin to describe what a great help reading this forum has been to me. I discovered the Beacon while I was researching Velcade and Revlimid for my mum.
I am from Malaysia and it is not easy to find resources here for this disease.
My mum (who will be 80 in July) was diagnosed with smoldering multiple myeloma back in 2007 and so far she has had one relapse. She has been given thalidomide and Zometa twice and thankfully she suffered no serious side effects from either treatment.
She was being regularly monitored at our local hospital and starting from approximately August 2017, the M-protein levels in her blood began increasing and by November it was at around 24. The haematologist was recommending us to start treatment again and we were told to decide between putting her on either Velcade or Revlimid.
However, in late December 2017, she started experiencing severe pain whenever she tried to stand up and her legs buckled whenever she tried to walk. She was admitted to hospital and after an MRI scan, it was discovered that she had a large tumour on her spine (T4 to T7) which had also caused a spinal fracture and also destabilized her spine. She had surgery to insert an implant to re-stabilize her spine so that she would not feel as much pain when she wanted to turn or to sit up. However, she was paralysed from the stomach downwards and is now bedridden.
The haematologist advised us to try either Velcade or Revlimid although it will not cure her of her paralysis. The doctor said not continuing any treatment whatsoever will lead my mum to have bone pain (which was described as being very severe) and also kidney failure which would require her to start dialysis.
In the meantime, she was also prescribed dexamethasone (4 mg) to reduce the inflammation of her spinal tumour, which made her constantly hungry and sweaty. Her dosage ended last Monday and she now says that she is feeling some pain whenever we lift her from her bed to the wheelchair.
I was at a total loss as to whether we should take the doctor's advice as my mum was not in a position to make a decision as she was getting easily confused and had trouble with her memory.
I could not decide if my mum should resume being treated to control her multiple myeloma or not because on the one hand, it would not cure her of her paralysis and even if the drugs worked, it would only be a matter of time before she relapsed.
I have now decided to try Velcade and she will be getting her first injection (subQ injection) this coming Monday. I finally decided to try Velcade in the hope that her eventual passing will be as pain free as possible.
Reading this forum has certainly helped to prepare me for what could possibly lie ahead and although reading the forums here can be very scary, I am also helped tremendously by the advice and recommendations from other multiple myeloma patients and caregivers as to what has helped them or their loved ones in reducing the side effects of treatment.
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vyka - Name: vyka
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 69
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