Hi Veganmartin,
Sorry to hear about your mother's issues with C diff.
Have your doctor's discussed the possibility of a so-called "fecal transplant" as a potential solution to your mother's recurrent C diff? Here is Wikipedia article that explains the procedure:
http://en.wikipedia.org/wiki/Fecal_bacteriotherapy
It sounds like a bizarre concept, but it apparently can be very helpful in cases where the C diff is not responding to other treatment.
I do not know, however, whether there may be problems using this approach with myeloma patients. That would be something your doctors would need to consider and discuss with you and your mother.
Forums
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
VeganMartin, you might consider, if your dr. is okay with it, Florastor, a specific probiotic. It supposedly has been used specifically FOR C. diff. My Mom (also with multiple myeloma, diagnosed at age 70, she is now 73) had two different bouts of C. diff...the Florastor did help in addition to the usual conventional treatment. I hope things start improving and she regains her strength.
Something else to consider for your Mom's back pain is called a radiofrequency ablation(RFA). It is a minimally invasive procedure where trained doctor inserts very thin needle into area (as they determine which is best level due to pain/x-rays, etc.) - but NOT into the spine- and the needle heats up basically ablating (burning/zapping) the nerve endings. My Mom has had good relief with this procedure (the injections of steroids/numbing agents) did nothing for her. Not sure this is something they can do in the hospital though. This was done by a pain specialist (one who does not use prescribe narcotics in general) (Dr. Soin in Dayton, Ohio).
Something else to consider for your Mom's back pain is called a radiofrequency ablation(RFA). It is a minimally invasive procedure where trained doctor inserts very thin needle into area (as they determine which is best level due to pain/x-rays, etc.) - but NOT into the spine- and the needle heats up basically ablating (burning/zapping) the nerve endings. My Mom has had good relief with this procedure (the injections of steroids/numbing agents) did nothing for her. Not sure this is something they can do in the hospital though. This was done by a pain specialist (one who does not use prescribe narcotics in general) (Dr. Soin in Dayton, Ohio).
-
Twi - Name: Twi
- Who do you know with myeloma?: My wonderful Mom, Janet
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 70
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
Hi everyone. Thank you for all of the replies. Mom was discharged from the hospital two weeks ago on Wednesday and the following day we got her into see Dr. Lee in the Multiple Myeloma Dept at Roswell Park Cancer Institute. She had testing done (blood and urine tests, full skeletal xray and a bone marrow MRI) all last week and yesterday we went back to see Dr. Lee with the results. He did confirm that she does have IgA lambda multiple myeloma (the type with the light chains, which is why it's damaged her kidneys and she's on dialysis now) and that her bone marrow is 75% packed with the plasma cells, so it's very extensive. He said that's why we have to start treatment NOW. I wasn't surprised that it was extensive, given the nearly 4 months w/o any treatment and prior to that, we only had the one more of just Revlimid/Dexa combo and Revlimid was only at 5mg. She's also now lost a total of 50 pounds since September (she's now down to 107 and in a wheelchair). She is able to walk for a bit with a walker and on good days, she's able to walk on her own for short periods of time in the house. She has to have transportation to/from dialysis and these other appointments.
Sorry to jump around. So, he wants to do a three phase treatment approach: 1) Induction: using VRBD (minus the Biaxin b/c she is still on a vanco taper for her c. diff. and we don't want to risk a new ABx into the mix - which, I'm still going to consult with a colleague of mine who is an infectious disease specialist and the hospital epidemiologist to ensure that the recurrent c diff won't come back once she completes the vanco and is on Biaxin. She will have 6-10 treatment cycles (each cycle=1month). # dependent on how she responds. Testing at the end of each cycle to track how she's doing. 2) Consolidation: Big dose of Melphalan and then the SCT (using her own stem cells). He explained the entire process of this phase and it sounds much like others on this forum. 3) Maintenance with Revlimid at 10 mg (alone w/o dexa).
We are very upbeat, positive and hopeful, but I'm still really concerned that you don't go into the battle of your life w/o a strong foundation (her recent very long length of stay hospitalizations and losing 30% of her total body weight in a period of 6 mo). Dr. Lee thinks b/c she was so healthy before her symptoms began (September) and b/c she recovered from two very serious illnesses in the past few months (klebsiella pneumonia and recurrent c. diff) that she does have a strong healthy foundation. He's the expert at this and I'm going to relay on what he says. Also, her kidneys seems to be recovering. In October when she was first hospitalized to begin dialysis, her creatinine was almost 11. Yesterday (she had dialysis on Wednesday morning) was at 1.73. Now I know that goes up and down, but a couple months ago, immediately after dialysis, her creatinine improved but the next morning, it would be very high again. Plus, she's urinating now and wasn't before. So, maybe with this treatment, she could come off dialysis, given that her kidneys were not damaged beyond repair.
Oh, and for the fecal transplant - yes, we found GI doc in Rochester that is doing them and he was willing to treat my mother, but we were using this as a last resort. Several medical specialists think it's cutting-edge and the future of c. diff treatment, but given that she has multiple myeloma, her immune system isn't like most others and introducing new bacteria into her GI tract could be risky. So, we're hopeful that the healing in the hospital and vanco taper she's on now will do the trick.
So, one of my biggest questions is - how extensive is 75% packed plasma cell in the bone marrow. What did others see when first diagnosed? He is opting out of doing a bone marrow aspiration b/c the bone marrow MRI that he did saw that % and why put her through that if he got the info he needs to diagnose and treat her?
Sorry to jump around. So, he wants to do a three phase treatment approach: 1) Induction: using VRBD (minus the Biaxin b/c she is still on a vanco taper for her c. diff. and we don't want to risk a new ABx into the mix - which, I'm still going to consult with a colleague of mine who is an infectious disease specialist and the hospital epidemiologist to ensure that the recurrent c diff won't come back once she completes the vanco and is on Biaxin. She will have 6-10 treatment cycles (each cycle=1month). # dependent on how she responds. Testing at the end of each cycle to track how she's doing. 2) Consolidation: Big dose of Melphalan and then the SCT (using her own stem cells). He explained the entire process of this phase and it sounds much like others on this forum. 3) Maintenance with Revlimid at 10 mg (alone w/o dexa).
We are very upbeat, positive and hopeful, but I'm still really concerned that you don't go into the battle of your life w/o a strong foundation (her recent very long length of stay hospitalizations and losing 30% of her total body weight in a period of 6 mo). Dr. Lee thinks b/c she was so healthy before her symptoms began (September) and b/c she recovered from two very serious illnesses in the past few months (klebsiella pneumonia and recurrent c. diff) that she does have a strong healthy foundation. He's the expert at this and I'm going to relay on what he says. Also, her kidneys seems to be recovering. In October when she was first hospitalized to begin dialysis, her creatinine was almost 11. Yesterday (she had dialysis on Wednesday morning) was at 1.73. Now I know that goes up and down, but a couple months ago, immediately after dialysis, her creatinine improved but the next morning, it would be very high again. Plus, she's urinating now and wasn't before. So, maybe with this treatment, she could come off dialysis, given that her kidneys were not damaged beyond repair.
Oh, and for the fecal transplant - yes, we found GI doc in Rochester that is doing them and he was willing to treat my mother, but we were using this as a last resort. Several medical specialists think it's cutting-edge and the future of c. diff treatment, but given that she has multiple myeloma, her immune system isn't like most others and introducing new bacteria into her GI tract could be risky. So, we're hopeful that the healing in the hospital and vanco taper she's on now will do the trick.
So, one of my biggest questions is - how extensive is 75% packed plasma cell in the bone marrow. What did others see when first diagnosed? He is opting out of doing a bone marrow aspiration b/c the bone marrow MRI that he did saw that % and why put her through that if he got the info he needs to diagnose and treat her?
-
veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
I had 70 percent Bmb after induction and sct went down to less than 5
Good luck, prayers
Good luck, prayers
-
Maria
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
Wow, Maria. That's incredible. You had 70% after or before induction? I thought to end the induction phase, one's % had to be near remission.
That gives me def. hope.
I am concerned that her being on hemodialysis currently would put her at greater risk for a SCT, but maybe by the time she's done with the induction phase, the drug combo therapy will help her kidneys to recover and she can be off dialysis and able to have the SCT.
Thank you!
That gives me def. hope.
I am concerned that her being on hemodialysis currently would put her at greater risk for a SCT, but maybe by the time she's done with the induction phase, the drug combo therapy will help her kidneys to recover and she can be off dialysis and able to have the SCT.
Thank you!
-
veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
Hello all. Just went into see my mother's oncologist @ Roswell Park Cancer Institute (first round of treatment is over). They were thrilled with her response. We all burst out into tears when they told us. They are thinking ASCT in 4-6 months. Here are her levels:
IGA: Baseline: 2290, Now: 1000
IGA Lambda: Baseline: 2440, Now: 475
M-Spike: Baseline: 1.61, Now: 0.76
I've been holding off on setting a date for my wedding and we discussed it briefly at the appointment. I want to hold it late summer, before her ASCT b/c if we wait until after, it could possibly be winter (and, if she has complications, it will be even longer). My biggest fear is that she becomes sick after the transplant and wouldn't be able to be at the wedding. So, a question I have is when she is at remission level/near remission levels and they harvest her stem cells and freeze them, can she wait a couple months before the transplant? That way, if she continues having excellent response to the treatments and she's ready by say, July, can she continue treatment (to keep the multiple myeloma levels down) and wait until say, September to have the transplant, or is it best to as soon as someone hits that remission level, to immediately move to transplant?
Thank you
IGA: Baseline: 2290, Now: 1000
IGA Lambda: Baseline: 2440, Now: 475
M-Spike: Baseline: 1.61, Now: 0.76
I've been holding off on setting a date for my wedding and we discussed it briefly at the appointment. I want to hold it late summer, before her ASCT b/c if we wait until after, it could possibly be winter (and, if she has complications, it will be even longer). My biggest fear is that she becomes sick after the transplant and wouldn't be able to be at the wedding. So, a question I have is when she is at remission level/near remission levels and they harvest her stem cells and freeze them, can she wait a couple months before the transplant? That way, if she continues having excellent response to the treatments and she's ready by say, July, can she continue treatment (to keep the multiple myeloma levels down) and wait until say, September to have the transplant, or is it best to as soon as someone hits that remission level, to immediately move to transplant?
Thank you
-
veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
36 posts
• Page 4 of 4 • 1, 2, 3, 4