Hi There. I am new to this forum (we are from Australia). My husband was diagnosed with stage 3 Multiple Myeloma 4 weeks ago. He is 48 years old has always been a fairly fit guy who rarely went to the doctor but became increasingly tired over the last year until he could barely get out of bed in the last few weeks before they diagnosed him. His exhaustion was previously thought to be due to thyroid issues.
I am now trying hard to educate myself with everything so as a start I am keen to know what advice you have for a newly diagnosed patient. He is on Velcade, Cyclophasphamide and Dexamathesone. They planning to do stem cell transplant soon (in the next 2-3 months).
We both feel a strong sense of confidence in his doctor who is a qualified Oncologist + Haemotologist. We think he is exceptionally dedicated and committed. But I do have a lot of questions that I was hoping to be answered by people who have experienced this first hand;
1. In retrospect - what questions would you ask upfront or did ask that you felt were key.
2. If the above treatment plan does not work, any advice on plan B? I prefer to know our family has Plan B and are not on the back foot all the time.
3. What alternative treatments have you found very useful to compliment this treatment plan?
4. Is there any better treatment plan than what he is getting? I get the feeling that this is currently very good. Is this any different to what specialist multiple myeloma centres around the world are offering?
5. His MRI's show almost no bone lesions. Doc says this is very good for Stage 3. Anyone else have this experience? Were you able to keep the lesions away with bone strengthening medication?
6. At what stages and for how long were you bedridden (i.e. unable to work or go out?). Any advice on when to take it easy and when to push yourself?
7. Is there anything I can do to help him lift his energy levels - he looks exhausted on the days he is not taking steroids.
8. Any other advice?
I am strangely optimistic even though he is stage 3. It is early days I know, but he looks really good on steroid days. Has shown no bone or other organ damage. Worst is his kidneys which apparently look better already and doctor believes could be reversible. I am wondering if this the quiet before the storm?
Thanks in advance for your feedback.
Take Care Xx
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5 posts
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shaznics - Name: Sharon
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 48
Re: Newly Diagnosed - Stage 3
Hello Sharon, sorry you have to be here, but welcome.
I'll try to answer a few of your questions, and allow others to chime in with additional feedback. If you haven't already, you should take some time to search through the forum, as I think you'll find quite a bit of information that will be useful (and which will probably answer some of your questions).
Just as an example, there was a poll recently here in the forum that asked about the first treatment patients received if they were diagnosed in the past couple of years. You'll find the results here:
https://myelomabeacon.org/forum/weekly-poll-initial-myeloma-therapy-2013-t2137.html
You'll see that VCD (or CyBorD, as it's sometimes called), which is what is planned for your husband, is one of the four most common therapies among those who responded to the poll.
RVD (VRD) is the most common option, and it also has the highest response rate among the top four regimens in the poll. But it's generally not an option outside of the U.S. due to health system restrictions.
Thus, VCD is probably the most effective treatment that your husband will be able to get as an initial treatment in Australia.
One thing that you should know at this point is that the stage of your husband's disease is not as important a factor in myeloma as it is in other cancer's. Instead, what you need to find out is what the risk classification (low-risk, high-risk, etc.) of your husband's disease is.
That will depend on the chromosomal abnormalities which have been found in your husband's myeloma cells. You need to have a nurse or physician point out to you in your husband's lab results what those results show. Your husband may have no chromosomal abnormalities, which would be good, or he may have one or more.
My final bit of advice is to suggest that you find out what sort of clinical trials your husband might be able to take part in. There may be trials going on in Australia which could give your husband access to treatments he wouldn't otherwise be able to get. They also might provide him with regular testing and other sorts of lab results he might not otherwise be provided with.
You can search for clinical trials, by location, at http://www.clinicaltrials.gov.
I'll try to answer a few of your questions, and allow others to chime in with additional feedback. If you haven't already, you should take some time to search through the forum, as I think you'll find quite a bit of information that will be useful (and which will probably answer some of your questions).
Just as an example, there was a poll recently here in the forum that asked about the first treatment patients received if they were diagnosed in the past couple of years. You'll find the results here:
https://myelomabeacon.org/forum/weekly-poll-initial-myeloma-therapy-2013-t2137.html
You'll see that VCD (or CyBorD, as it's sometimes called), which is what is planned for your husband, is one of the four most common therapies among those who responded to the poll.
RVD (VRD) is the most common option, and it also has the highest response rate among the top four regimens in the poll. But it's generally not an option outside of the U.S. due to health system restrictions.
Thus, VCD is probably the most effective treatment that your husband will be able to get as an initial treatment in Australia.
One thing that you should know at this point is that the stage of your husband's disease is not as important a factor in myeloma as it is in other cancer's. Instead, what you need to find out is what the risk classification (low-risk, high-risk, etc.) of your husband's disease is.
That will depend on the chromosomal abnormalities which have been found in your husband's myeloma cells. You need to have a nurse or physician point out to you in your husband's lab results what those results show. Your husband may have no chromosomal abnormalities, which would be good, or he may have one or more.
My final bit of advice is to suggest that you find out what sort of clinical trials your husband might be able to take part in. There may be trials going on in Australia which could give your husband access to treatments he wouldn't otherwise be able to get. They also might provide him with regular testing and other sorts of lab results he might not otherwise be provided with.
You can search for clinical trials, by location, at http://www.clinicaltrials.gov.
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JimNY
Re: Newly Diagnosed - Stage 3
Hello from Seattle Shaznics,
The treatment your husband is currently getting is an excellent first line approach. In terms of a "Plan B" he could be treated with Thalidomide or Revlimid based combinations as well. These are reasonably well tolerated drugs with good activity in myeloma. Doxil is another drug that is often used...I have only mentioned a few of the possible drugs that can be used to treat myeloma.. So....there are "Plan Bs, Plan C's and Plan D's for him". Revlimid may or may not be available to him in the Australian health care system (it is very expensive).
You should find out what the results of his myeloma cytogenetics are. In particular the "FISH" results on his bone marrow biopsy. These are very valuable in helping to determine overall prognosis.
There are other drug combinations that may be better than VCD or CyBorD. But they are very, very expensive (Revlimid +_ Velcade + dexamethsone (RVD) or available only in clinical trials...e.g. carfilzomib based front line therapy, elotuzumab, pomalidomide...etc. In addition we are not certain that they are "better" in terms of prolonging myeloma patient's lives even though they may drive the m-spike lower and faster.
The relative lack of bone involvement does not help alot to determine prognosis. Bisphosphonates will help to reduce fractures in the future and may prolong life.
Any other advice? Stay informed...ask questions....try to connect with a myeloma center in Australia if possible for clinical trials in the future. Attend myeloma patient education sessions in your area or view them on the internet.
Thank you for sharing your questions with the readers of the Beacon and myself !
The treatment your husband is currently getting is an excellent first line approach. In terms of a "Plan B" he could be treated with Thalidomide or Revlimid based combinations as well. These are reasonably well tolerated drugs with good activity in myeloma. Doxil is another drug that is often used...I have only mentioned a few of the possible drugs that can be used to treat myeloma.. So....there are "Plan Bs, Plan C's and Plan D's for him". Revlimid may or may not be available to him in the Australian health care system (it is very expensive).
You should find out what the results of his myeloma cytogenetics are. In particular the "FISH" results on his bone marrow biopsy. These are very valuable in helping to determine overall prognosis.
There are other drug combinations that may be better than VCD or CyBorD. But they are very, very expensive (Revlimid +_ Velcade + dexamethsone (RVD) or available only in clinical trials...e.g. carfilzomib based front line therapy, elotuzumab, pomalidomide...etc. In addition we are not certain that they are "better" in terms of prolonging myeloma patient's lives even though they may drive the m-spike lower and faster.
The relative lack of bone involvement does not help alot to determine prognosis. Bisphosphonates will help to reduce fractures in the future and may prolong life.
Any other advice? Stay informed...ask questions....try to connect with a myeloma center in Australia if possible for clinical trials in the future. Attend myeloma patient education sessions in your area or view them on the internet.
Thank you for sharing your questions with the readers of the Beacon and myself !
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Newly Diagnosed - Stage 3
Thank you so much for all this information. I clearly have so many more questions for the doctor now and a lot more to study.
It's only been 4 weeks so we still feeling very overwhelmed with all the information and trying to understand it all.
Since we do not know whether he is high risk or low risk and this will be my next question to the doctor. I would like to know if anybody was diagnosed as high risk and has a good story to tell. Once again - I need to be equipped with the positive before I pose the question.
Thanks again - overwhelmed by the effort and caring.
Take care xxx
It's only been 4 weeks so we still feeling very overwhelmed with all the information and trying to understand it all.
Since we do not know whether he is high risk or low risk and this will be my next question to the doctor. I would like to know if anybody was diagnosed as high risk and has a good story to tell. Once again - I need to be equipped with the positive before I pose the question.
Thanks again - overwhelmed by the effort and caring.
Take care xxx
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shaznics - Name: Sharon
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 48
Re: Newly Diagnosed - Stage 3
Regarding your question about how long he will be down with the transplant. I was not able to work for six weeks, starting the week they gave me the high dose chemo for the transplant. However, after the six weeks I really felt good and was back at work full time. The transplant process wasn't the worst. Really sick for about two weeks of the six. Worst part was the screwed up taste buds which lasted a couple of months. Good luck to your husband. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
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