I went to my standard post follow up after chemo, pre Stem Cell transplant and got hit by a bomb. My chemo did not work and now they say I am just left with maintenance options. Strangest thing is I have 20% myeloma cells now...same as before chemo but I have no othe test results that indicate I eve had multiple myeloma. No M spike, no symptoms, no more skeletal damage.....eveything is normal except I have 20% myeloma cells. Thye are almost treating it as post transplant or as smolteing. Pleas help...w are despeate and scared, who would be a good second opinin, is this something thathappens frequently.....what qre my options....what can I do.?
We are so afraid this is it.....I am so afraid to lose my wife who I love so much....
Forums
Re: Chemo Failed
Sorry to hear your bad news. It's possible your myeloma is now non-secretory (present by not secreting M-protein). But I'd definitely get a second opinion. Hoping you'll get better news then. Regardless of whether you still have 20% myeloma cells, there should be other chemo options. Just because one failed, doesn't mean you have to give up. There are others you can try. In order to recommend someone for a second opinion, where are you located?
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Cindylou
Re: Chemo Failed
I live in Charlotte. My myeloma specialist is at Duke and I will see her tomorrow.
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bluemountain
Re: Chemo Failed
Duke's a good place, I'm sure. You could get a second opinion from UNC-Chapel Hill. Or consider going further away to one of the top myeloma treatment centers, such as Mayo Clinic, Dana Farber, UAMS, etc.
The Beacon has a listing of all the top myeloma centers: https://myelomabeacon.org/treatment-centers/
The Beacon has a listing of all the top myeloma centers: https://myelomabeacon.org/treatment-centers/
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Cindylou
Re: Chemo Failed
Hi Bluemountain, It is such a kick in the guts when the chemo doesn't work. Don't give up hope, there always seems to be something else you can try. Consult with another myeloma specialist, a second opinion cant hurt. In Australia there is a set protocol of what chemo you can have and when (the treatment is subsidised by the government) and I had exhausted all of them. My myeloma would take a hit and then keep on growing. One of the myeloma specialists I saw had a group of patients that he termed "bad eggs", ones that the myeloma wouldnt be controlled by chemo or an auto SCT, of course I was in that group! Then came that awful day when I was told there was no more treatment thankfully they changed their minds and tried something new by modifying the conditioning treatment for an allograft (April 2011). I am now in remission.
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Chemo Failed
My husband had his SCT at Mayo last October. When we got there his Mspike was higher than they wanted it to be. They hit him with some big guns chemo, and then 10 days later the normal transplant protocol was started. He is now 1 year post transplant and doing well. His Mspike has never disapeared, but has stayed at 0.3 since Feb.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Chemo Failed
Thank you for the responses. It is very hearbreaking to me to know I feel great, I have never had any symptoms, my cell count is only 20% and my m spike is 0. All of my other measurable numbers show no sign of multiple myeloma and they are giving up. No treatment....watch and wait. Possibly using Velcade as a maintenamance drug. Thee has got to be something more, a possibleroute to Stem Cell transplant or other alternative treatments. looking for ideas, altenatives. I feel grat but they tore my heart out yesteday, I am recently married and so in love, I want a chance!
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bluemountain
Re: Chemo Failed
Dear bluemountain,
I have a couple of questions:
1) what were you treated with initially and for how long?
2) do you have smoldering myeloma or symptomatic myeloma? What were your symptoms of disease? Anemia? Bone problems? Kidney issues? High calcium levels?
Thanks!
Pete V.
I have a couple of questions:
1) what were you treated with initially and for how long?
2) do you have smoldering myeloma or symptomatic myeloma? What were your symptoms of disease? Anemia? Bone problems? Kidney issues? High calcium levels?
Thanks!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Chemo Failed
Doc, I initially had a large plasma Cytoma that was removed after it was destroyed through radiation. I then did four cycles of Rev/Dex/Val. Never got sick or really felt anything. Beyond that I have no symptoms (I work 8 hours or more every day, I am recently married, plan on a family, never had so much as a cold or fever in over 20 years). I initiated going to the DR because of back pain. 5 doctors told my it was a single Plasmacytoma but there are two other lesions I think.. Never have had an M-Spike or any other blood test reading that showed anything...no anemia, no pain, no low white cell counts. Dr. says I am probably one of the 1-2% who do not have an M-spike.
Since my first posting I did go see my multiple myeloma specialist at Duke and she told me she would have no problem doing a SCT and did not understand why my oncologist said it was an issue. She said she would simply hit me with a higher does chemo then get the cells she needs for the transplant.. I go see her next week and she is running a PET and then plans on setting the schedule for transplant.
I feel great.....except for the problems with my back, I really feel stronger and better then I have in years. I travel at will, see 2 or 3 concerts a week, work in the yard ...normal stuff, I really have none of the issues I continue to read about ...yet ..... and this whole thing is simply confusing. I know it is coming and I know it is going to be painful. Looks like every time the Dr. needs to see the status of my multiple myeloma they have to do a Bone Marrow Biopsy...I think that is rushing the SCT because....both Dr's seem to think my disease is moving very slow and I have probably had it for 4 years or so (I have an old back xray that shows the start of a tumor in 2009), they don't seem to think I need much in the way of treatment yet but ....if they wait they have no way to monitor me except Bone Marrow Biopsy.....does this make any sense LOL!!
Since my first posting I did go see my multiple myeloma specialist at Duke and she told me she would have no problem doing a SCT and did not understand why my oncologist said it was an issue. She said she would simply hit me with a higher does chemo then get the cells she needs for the transplant.. I go see her next week and she is running a PET and then plans on setting the schedule for transplant.
I feel great.....except for the problems with my back, I really feel stronger and better then I have in years. I travel at will, see 2 or 3 concerts a week, work in the yard ...normal stuff, I really have none of the issues I continue to read about ...yet ..... and this whole thing is simply confusing. I know it is coming and I know it is going to be painful. Looks like every time the Dr. needs to see the status of my multiple myeloma they have to do a Bone Marrow Biopsy...I think that is rushing the SCT because....both Dr's seem to think my disease is moving very slow and I have probably had it for 4 years or so (I have an old back xray that shows the start of a tumor in 2009), they don't seem to think I need much in the way of treatment yet but ....if they wait they have no way to monitor me except Bone Marrow Biopsy.....does this make any sense LOL!!
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bluemountain
Re: Chemo Failed
Dear blue mountain,
A couple of thoughts:
1) Since you have no M-spike (I am assuming your serum free light chains are also normal), bone marrow biopsies will be a more frequent event in your life than other patients with secretory myeloma. You must realize, though, that bone marrow biopsies are not perfect as a way of monitoring response. There can be variability in the level of marrow involvement from one area to the next. As such, the 20% pre- and post-RVD biopsies could be related to sampling. Also, how many cycles did you get? Did they give it a chance to work?
2) Since there are 20% plasma (myeloma) cells in your marrow and you have developed a symptomatic spine plasmacytoma, odds are that you will eventually develop other symptomatic bone lesions. As such, additional therapy makes sense. A lack of response to the RVD chemotherapy would not preclude a transplant. Your case is quite unique. As such, without seeing all of the information, I hesitate to suggest what the best path to take might be. Being down the road from Duke, I work closely with your physician there and I can say that you are in good hands.
I think you are going to do well in the long run. Let us know if there is anything we can do to help. Take care and good luck!
Pete V.
A couple of thoughts:
1) Since you have no M-spike (I am assuming your serum free light chains are also normal), bone marrow biopsies will be a more frequent event in your life than other patients with secretory myeloma. You must realize, though, that bone marrow biopsies are not perfect as a way of monitoring response. There can be variability in the level of marrow involvement from one area to the next. As such, the 20% pre- and post-RVD biopsies could be related to sampling. Also, how many cycles did you get? Did they give it a chance to work?
2) Since there are 20% plasma (myeloma) cells in your marrow and you have developed a symptomatic spine plasmacytoma, odds are that you will eventually develop other symptomatic bone lesions. As such, additional therapy makes sense. A lack of response to the RVD chemotherapy would not preclude a transplant. Your case is quite unique. As such, without seeing all of the information, I hesitate to suggest what the best path to take might be. Being down the road from Duke, I work closely with your physician there and I can say that you are in good hands.
I think you are going to do well in the long run. Let us know if there is anything we can do to help. Take care and good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
11 posts
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