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Re: OK to be afraid of an allo transplant?
I'm going to die from this aren't I? I've already put it into my brain that if I do the allo, it's adios.
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Guest1
Re: OK to be afraid of an allo transplant?
Guest1,
Are you seeing a counselor who can help you with your emotional health right now? You are asking very valid questions, but you also seem to have a fatalistic attitude about your disease and any possible treatments going forward. This isn't a bad thing to have, but to the depth that you seem to be experiencing it could negatively affect any treatment that you pursue. I would suggest that you ask to speak with a social worker at your cancer center who can then recommend a psychologist or psychiatrist if s/he feels that is appropriate. The social worker might be the one to offer you the emotional support.
You have some hard decisions to make. We all have periods when we need emotional support outside of ourselves, our friends and our families. Please consider it while you are going through this fact finding and decision making process.
Nancy in Phila
Are you seeing a counselor who can help you with your emotional health right now? You are asking very valid questions, but you also seem to have a fatalistic attitude about your disease and any possible treatments going forward. This isn't a bad thing to have, but to the depth that you seem to be experiencing it could negatively affect any treatment that you pursue. I would suggest that you ask to speak with a social worker at your cancer center who can then recommend a psychologist or psychiatrist if s/he feels that is appropriate. The social worker might be the one to offer you the emotional support.
You have some hard decisions to make. We all have periods when we need emotional support outside of ourselves, our friends and our families. Please consider it while you are going through this fact finding and decision making process.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: OK to be afraid of an allo transplant?
Guest 1,
I wish that I could give you a big hug right now and promise you that everything will be OK. You have youth on your side which is a BIG plus. If you are healthy and you have no kidney nor liver problems, that is also in your favor if you decide to go forward with transplant. If your oncologist feels that you can do equally well on treatment and this avenue is easier for you to deal with at this time, than wait. I didn't have that option as I have very aggressive myeloma.
I agree with talking to a counselor. My younger brother who is a cancer survivor, talked me through a lot of my fears. I remember that my fellow patients on the BMT ward who seemed to have the most problems with recovery from transplant were those who were struggling with depression. They couldn't see the light at the end of the tunnel. You will have days were you will be fatigued and will not feel like eating or getting out of bed, but those days won't last. You do feel better every day, but you have to push your self to get up and walk and force yourself to eat. That is were a good support system comes in.
Being around other patients on the BMT ward helped because we were all in the same boat and we cheered each other on. You not only have to be physically in shape for the transplant, you also have to be emotionally ready. If you need the time to address your fears by talking to other patients or a counselor, then by all means do this first.
It's ok to be afraid. Any one who has to deal with this crummy cancer is already pretty brave.
Big hug!
I wish that I could give you a big hug right now and promise you that everything will be OK. You have youth on your side which is a BIG plus. If you are healthy and you have no kidney nor liver problems, that is also in your favor if you decide to go forward with transplant. If your oncologist feels that you can do equally well on treatment and this avenue is easier for you to deal with at this time, than wait. I didn't have that option as I have very aggressive myeloma.
I agree with talking to a counselor. My younger brother who is a cancer survivor, talked me through a lot of my fears. I remember that my fellow patients on the BMT ward who seemed to have the most problems with recovery from transplant were those who were struggling with depression. They couldn't see the light at the end of the tunnel. You will have days were you will be fatigued and will not feel like eating or getting out of bed, but those days won't last. You do feel better every day, but you have to push your self to get up and walk and force yourself to eat. That is were a good support system comes in.
Being around other patients on the BMT ward helped because we were all in the same boat and we cheered each other on. You not only have to be physically in shape for the transplant, you also have to be emotionally ready. If you need the time to address your fears by talking to other patients or a counselor, then by all means do this first.
It's ok to be afraid. Any one who has to deal with this crummy cancer is already pretty brave.
Big hug!
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SVBriggs
Re: OK to be afraid of an allo transplant?
Hi SVBriggs. What anti cancer program did you mention? As far as I know, no such a program exist for myeloma. Or, this program that you had been following was for another cancer?
Guest1. Yes,transplant can be dangerous but it saved my friend life.
Girl
Guest1. Yes,transplant can be dangerous but it saved my friend life.
Girl
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nomm
Re: OK to be afraid of an allo transplant?
Guest 1
If this helps, only 1 allo patient on my BMT floor died post transplant about 2 weeks after he received his donor's stem cells. He was a leukemia patient in his late 60's who had been through major chemo prior to his transplant. He picked up an infection. It happens. He had been heavily treated for the past few years prior, which is why my doctors felt that the healthier you are prior to transplant the better the outcome. As I stated before, my GVHD is very minor and has had no impact on my quality of life. Some patients have a tougher time with GVHD, but I would rather be alive and have GVHD than the alternative.
You seem to have more options available to you. There are some very good treatments available and more appear to be in the works. Who knows, a cure may be available in the next few years. If I had the option to wait, I probably would not have gone through transplant at this time. But I am glad that I did. I survived, I came through it all great, and I feel good. A year ago I felt and looked like someone dying of cancer. I weighed 110 pounds and was so anemic that I couldn't breathe. This morning, 7 months post allo-transplant, I rode my bike for 45 minutes and I feel great. I did not feel this well on treatment. I don't know if my remission will hold (I pray that it does) but today I am grateful to my transplant doctors at Moffitt. I know that I am fortunate and that not everyone does as well, but I met many patients who also did very well, even though they initially had some rough days.
If this helps, only 1 allo patient on my BMT floor died post transplant about 2 weeks after he received his donor's stem cells. He was a leukemia patient in his late 60's who had been through major chemo prior to his transplant. He picked up an infection. It happens. He had been heavily treated for the past few years prior, which is why my doctors felt that the healthier you are prior to transplant the better the outcome. As I stated before, my GVHD is very minor and has had no impact on my quality of life. Some patients have a tougher time with GVHD, but I would rather be alive and have GVHD than the alternative.
You seem to have more options available to you. There are some very good treatments available and more appear to be in the works. Who knows, a cure may be available in the next few years. If I had the option to wait, I probably would not have gone through transplant at this time. But I am glad that I did. I survived, I came through it all great, and I feel good. A year ago I felt and looked like someone dying of cancer. I weighed 110 pounds and was so anemic that I couldn't breathe. This morning, 7 months post allo-transplant, I rode my bike for 45 minutes and I feel great. I did not feel this well on treatment. I don't know if my remission will hold (I pray that it does) but today I am grateful to my transplant doctors at Moffitt. I know that I am fortunate and that not everyone does as well, but I met many patients who also did very well, even though they initially had some rough days.
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SVBriggs
Re: OK to be afraid of an allo transplant?
Hi Girl,
I was on Velcade, Dex and Revlimid. Standard treatment at Moffitt for newly diagnosed myeloma patients. I have IgA myeloma with del17 and t(14,16) subtype. My only initial symptoms were profound anemia and major weight loss. No bone nor kidney involvement. Most patients with t(14,16) have some form of kidney issue, but I was lucky.
I was on Velcade, Dex and Revlimid. Standard treatment at Moffitt for newly diagnosed myeloma patients. I have IgA myeloma with del17 and t(14,16) subtype. My only initial symptoms were profound anemia and major weight loss. No bone nor kidney involvement. Most patients with t(14,16) have some form of kidney issue, but I was lucky.
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SVBriggs
Re: OK to be afraid of an allo transplant?
Hi SVBriggs.
I probably did not understand, but you mentioned that you have been on anti cancer program for years because of your family history and your brother is cancer survivor. Did you mean family history of Myeloma or other cancer?
I probably did not understand, but you mentioned that you have been on anti cancer program for years because of your family history and your brother is cancer survivor. Did you mean family history of Myeloma or other cancer?
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nomm
Re: OK to be afraid of an allo transplant?
To Girl again,
Oh, the anti-cancer program was not a treatment but a diet, supplement and life style to lower my risk of contracting cancer (which runs in my family). It did not keep me from contracting myeloma, but I was in fantastic health otherwise. I am the only member of family who is not diabetic, nor has heart or blood pressure issues. I was in great shape going into transplant which worked to my advantage.
I was initially very upset with my diagnosis as I felt that I didn't deserve cancer as "I did everything right". But NO one deserves cancer and it can strike anyone at anytime, even the healthiest of us. That's what makes this disease so maddening.
I continue to follow healthy way of eating as I feel that I have to do whatever it takes to stick around. Someone has to feed the cat!
Oh, the anti-cancer program was not a treatment but a diet, supplement and life style to lower my risk of contracting cancer (which runs in my family). It did not keep me from contracting myeloma, but I was in fantastic health otherwise. I am the only member of family who is not diabetic, nor has heart or blood pressure issues. I was in great shape going into transplant which worked to my advantage.
I was initially very upset with my diagnosis as I felt that I didn't deserve cancer as "I did everything right". But NO one deserves cancer and it can strike anyone at anytime, even the healthiest of us. That's what makes this disease so maddening.
I continue to follow healthy way of eating as I feel that I have to do whatever it takes to stick around. Someone has to feed the cat!
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SVBriggs
Re: OK to be afraid of an allo transplant?
Thank you SVBriggs.
So, if I understand correct, the cancer in your family was not Myeloma, but another cancer?
This is correct?
I personally don't believe in supplements and diet as preventive measure for blood cancers, but for other cancers yes, it works, and mental status is very important. This is good that you have such a great counselor and support.
I think that wait and watch is not an approach at all. Blood cancers needed to be treated as aggressively as possible, then you see an effect.
So, if I understand correct, the cancer in your family was not Myeloma, but another cancer?
This is correct?
I personally don't believe in supplements and diet as preventive measure for blood cancers, but for other cancers yes, it works, and mental status is very important. This is good that you have such a great counselor and support.
I think that wait and watch is not an approach at all. Blood cancers needed to be treated as aggressively as possible, then you see an effect.
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nomm
Re: OK to be afraid of an allo transplant?
Nomm,
My brother had a rare and aggressive form of prostate cancer that strikes younger men and has poor prognosis. My Mom had bladder cancer. Two aunts (Mom's side) had ovarian and breast cancer. My Dad had prostate cancer. My Mom and brother survived (combination alternative and standard cancer therapies). No one in my family has history of myeloma or any other form of blood cancer.
An anti-inflammatory diet I feel may be of benefit in blood cancers as inflammation drives myeloma (I also use supplements to suppress inflammation), but you are absolutely right that blood cancers need to be treated aggressively and unfortunately with chemo as they are different from other cancers. I have seen a difference in my LDH levels when I added curcumin and fish oil to my diet. I also had my Il-6 level checked and it came down with the addition of curcumin. However much I feel that curcumin has helped, I know that it is most likely not a cure in itself (at least not once the cancer is full blown).
My brother had a rare and aggressive form of prostate cancer that strikes younger men and has poor prognosis. My Mom had bladder cancer. Two aunts (Mom's side) had ovarian and breast cancer. My Dad had prostate cancer. My Mom and brother survived (combination alternative and standard cancer therapies). No one in my family has history of myeloma or any other form of blood cancer.
An anti-inflammatory diet I feel may be of benefit in blood cancers as inflammation drives myeloma (I also use supplements to suppress inflammation), but you are absolutely right that blood cancers need to be treated aggressively and unfortunately with chemo as they are different from other cancers. I have seen a difference in my LDH levels when I added curcumin and fish oil to my diet. I also had my Il-6 level checked and it came down with the addition of curcumin. However much I feel that curcumin has helped, I know that it is most likely not a cure in itself (at least not once the cancer is full blown).
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SVBriggs
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