Forums
10 posts
• Page 1 of 1
Options for newly diagnosed multiple myeloma not responding to treatment
HI all.. my husband is 56 and was diagnosed with Multiple Myeloma in July 2011 .. we did one cycle days 1 4 8 11 of dexamethasone and chemo of Velcade and doxil.. they did bloodwork and show that the cancer is not responding.. they told us yesterday they are trying to get us to qualify for Revlimid so we will do 15 mg every other day along with the chemo we started with.. they told us we didn’t have alot of hope if the Revlimid didn’t work? has anyone else had similar problems..i am so worried that i can’t work, sleep or even think
-
sherrill Lund
Re: Options for newly diagnosed multiple myeloma not respond
I'm a bit surprised that they established 'non-response' based on one go-round (and how soon after the end of that go-round?)... but I guess they know better, eh?
You have to trust your doctors as best you can, but it's your life you are dealing with here. If you are uncertain, get a second opinion, for sure.
You have to trust your doctors as best you can, but it's your life you are dealing with here. If you are uncertain, get a second opinion, for sure.
-
Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Options for newly diagnosed multiple myeloma not respond
Hi Sherrill,
Like John, I'm a little surprised they had said that after the first cycle. When I was first diagnosed, they wouldn't even measure the paraprotein level until the third dose, as it wouldn't start taking effect till then. Obviously every case is different, but you should discuss your concerns with your doctor and maybe as John suggested, get a second opinion if your still not happy.
Something that I'm just starting to look into is Sesamin and it's benefits for people with Multiple Myeloma. http://mcr.aacrjournals.org/content/8/5/751.full.pdf
I'm also looking into Sesame Oil Pulling - sounds a bit odd I know, but I will try anything if it helps. If you do a google search for it, there is plenty of info about it.
Obviously make sure you discuss it with your doctor before trying any of these things as you wouldn't wan't it interfering with current treatment.
There seems to be new things coming along all of the time so do give up hope, there is normally something that they can try.
Sean
Like John, I'm a little surprised they had said that after the first cycle. When I was first diagnosed, they wouldn't even measure the paraprotein level until the third dose, as it wouldn't start taking effect till then. Obviously every case is different, but you should discuss your concerns with your doctor and maybe as John suggested, get a second opinion if your still not happy.
Something that I'm just starting to look into is Sesamin and it's benefits for people with Multiple Myeloma. http://mcr.aacrjournals.org/content/8/5/751.full.pdf
I'm also looking into Sesame Oil Pulling - sounds a bit odd I know, but I will try anything if it helps. If you do a google search for it, there is plenty of info about it.
Obviously make sure you discuss it with your doctor before trying any of these things as you wouldn't wan't it interfering with current treatment.
There seems to be new things coming along all of the time so do give up hope, there is normally something that they can try.
Sean
-
seantiernan - Name: Sean
- When were you/they diagnosed?: 5 November 2009
- Age at diagnosis: 44
Re: Options for newly diagnosed multiple myeloma not respond
You might want to consider a second opinion if your physician is already telling you there is not much hope after one cycle of chemo. He has the wrong attitude.
-
BuffaloPat - Name: Pat
- When were you/they diagnosed?: 2003
- Age at diagnosis: 51
Re: Options for newly diagnosed multiple myeloma not respond
Sean. What are you doing for your multiple myeloma. Rods kidneys I think is what is making them want to hit him pretty hard and be progressive. His kidney function had already gotten worse and protein levels had jumped one thousand mg s since first treatment. We will be doing stem cell retrieval when we get his multiple myeloma under control. That's why we are so hoping for Revlimid to work. We have not strated that yet just ssent the paperwork in
-
sherrill
Re: Options for newly diagnosed multiple myeloma not respond
Sherill,
My heart goes out to you and your husband--I hope maybe by now there has been more hopeful news. You didn't say where your husband is being treated or whether he is seeing an oncologist who specializes in myeloma or, at least, in blood cancers. If he is well enough to travel, you might check with a major cancer center. You can also go online to see if there is a multiple myleoma group in your area. Other patients may have recommendations for a doctor you might see for a second opinion, or the IMF resource folks may have recommendations as well-they were helpful to me when I was thinking about the need for a second opinion.
You might also check on whether there is a social worker, psychiatrist or counselor at the center where your husband is being treated. They can be useful people in helping with problem solving, finding resources, and dealing with stress. My husband and I found that we both needed professional help in dealing with my illness as well as the help of family and friends.
Let us know how your husband and you are doing. I know that myeloma is a complicated disease and that there is much that doctors still don't understand about targeting specific treatments in individual cases. Sometimes they have to try many different drugs and combinations-Hopefully one of these drugs or combinations of drugs will prove effective for your husband.
My heart goes out to you and your husband--I hope maybe by now there has been more hopeful news. You didn't say where your husband is being treated or whether he is seeing an oncologist who specializes in myeloma or, at least, in blood cancers. If he is well enough to travel, you might check with a major cancer center. You can also go online to see if there is a multiple myleoma group in your area. Other patients may have recommendations for a doctor you might see for a second opinion, or the IMF resource folks may have recommendations as well-they were helpful to me when I was thinking about the need for a second opinion.
You might also check on whether there is a social worker, psychiatrist or counselor at the center where your husband is being treated. They can be useful people in helping with problem solving, finding resources, and dealing with stress. My husband and I found that we both needed professional help in dealing with my illness as well as the help of family and friends.
Let us know how your husband and you are doing. I know that myeloma is a complicated disease and that there is much that doctors still don't understand about targeting specific treatments in individual cases. Sometimes they have to try many different drugs and combinations-Hopefully one of these drugs or combinations of drugs will prove effective for your husband.
-
karenh - Name: Karen Hendrickson
- Who do you know with myeloma?: myself
- Age at diagnosis: 59
Re: Options for newly diagnosed multiple myeloma not respond
well we just seen the dr Monday so we have not gotten Revlimid yet.. we are from Kansas and we are going to Wichita to the cancer center. i think if we dont' get the answers we want we will be going to MDAnderson in Houston, we have heard alot of good about them.
-
sherrill lund
Re: Options for newly diagnosed multiple myeloma not respond
sherrill wrote:
> Sean. What are you doing for your multiple myeloma. Rods kidneys I think is
> what is making them want to hit him pretty hard and be progressive. His
> kidney function had already gotten worse and protein levels had jumped one
> thousand mg s since first treatment. We will be doing stem cell retrieval
> when we get his multiple myeloma under control. That's why we are so hoping
> for Revlimid to work. We have not strated that yet just ssent the paperwork
> in
Hi Sherrill,
I've had one STC using my own stem cells, but unfortunately that didn't work for me, but one of those things we have to try first. I didn't go into any remission but relapsed straight away I was on Thalidomide, Dexamethason and Cyclophosphamide. (CTD)
For the last six or so months I've on the PAD, Doxorubicin, Dexamethasone and Velcade - I'm going to another STC but this time using one of my siblings, who I'm lucky enough to be a perfect match.
The last month or so has been a bit awkward as I have gone over the usual 6 cycles (each being three weeks longs) they don't like giving more Velcade than the six here. I've had problems with the Velcade causing Neuropathy and the STC isn't until the end of Sept/beginning of Oct although that could change. One of my doctors wants me on Lenalidomide (Revlimid) but others on the board don't want it because of the cost, we trying to cinvince them otherwise, depending on how my paraprotein levels are this week. My last measure was 12.
I don't currently have any issues with my kidneys so don't have to cope with that type of problem as well.
From my blood results after my first couple of cycles the para protein jumped up to it's highest before dropping - I think like everyone else has said on here that if you have concerns, which I think you do ( I know I would) then it might be best to ask for a second or even a third opinion.
Sean
> Sean. What are you doing for your multiple myeloma. Rods kidneys I think is
> what is making them want to hit him pretty hard and be progressive. His
> kidney function had already gotten worse and protein levels had jumped one
> thousand mg s since first treatment. We will be doing stem cell retrieval
> when we get his multiple myeloma under control. That's why we are so hoping
> for Revlimid to work. We have not strated that yet just ssent the paperwork
> in
Hi Sherrill,
I've had one STC using my own stem cells, but unfortunately that didn't work for me, but one of those things we have to try first. I didn't go into any remission but relapsed straight away I was on Thalidomide, Dexamethason and Cyclophosphamide. (CTD)
For the last six or so months I've on the PAD, Doxorubicin, Dexamethasone and Velcade - I'm going to another STC but this time using one of my siblings, who I'm lucky enough to be a perfect match.
The last month or so has been a bit awkward as I have gone over the usual 6 cycles (each being three weeks longs) they don't like giving more Velcade than the six here. I've had problems with the Velcade causing Neuropathy and the STC isn't until the end of Sept/beginning of Oct although that could change. One of my doctors wants me on Lenalidomide (Revlimid) but others on the board don't want it because of the cost, we trying to cinvince them otherwise, depending on how my paraprotein levels are this week. My last measure was 12.
I don't currently have any issues with my kidneys so don't have to cope with that type of problem as well.
From my blood results after my first couple of cycles the para protein jumped up to it's highest before dropping - I think like everyone else has said on here that if you have concerns, which I think you do ( I know I would) then it might be best to ask for a second or even a third opinion.
Sean
-
seantiernan - Name: Sean
- When were you/they diagnosed?: 5 November 2009
- Age at diagnosis: 44
Re: Options for newly diagnosed multiple myeloma not respond
Sherrill - we are also from Kansas - Rex had initial treatment in Topeka - then SCT at KU Med. His creatinine level was high which led to the multiple myeloma diagnosis. Did Velcade and Dex last year from May to September - then transplant latter part of October. I would highly recommend KU Med if you are wanting to stay in Kansas. Houston and Arkansas would also be great.
-
Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: Options for newly diagnosed multiple myeloma not respond
My husband is non-secretory, so we have to use the free-lite test to evaluate his myeloma. When he was first diagnosed a year ago his # was at 48-after 2 cycles of VRD his numbers went up to 199 (normal range is from 3.3-19)! We were fearful that he was not responding, but after continuing the same treatment, for 5 months, he did respond and we went into a stem cell transplant with his free lite number being at 23, nearly within the normal range. So, do not lose hope! But I agree a second opinion is a good idea. After his number went up, our Dr. even referred us to one who treats only myeloma and now we work with both Drs. Currently my hubby is in remission after his stem cell transplant.
-
windybushay
10 posts
• Page 1 of 1
Return to Treatments & Side Effects