How far into chemo did your doctors mention doing a stem cell transplant?

Liz888

Hey, All!

I'm writing because I have a question:

 

My dad had Stage 4 Splenal Marginal Zone Lymphoma, a low grade form of NHL. This spring, his low-grade lymphoma transformed into a high-grade lymphoma. Right now, he is under-going RCHOP and it appears to be working like a charm.

Here's my question:  For those of you who have undergone stem cell transplants, how far into your therapy did the doctor first mention plans for AFTER chemo? My dad just had his third chemo infusion.  I am in the position of being a "daughter of" with parents who don't ask many questions and who are too overwhelmed with today to be asking about the future. As such, I am left wondering what is coming next. From everything I have read, my dad is in a very high-risk category for recurrence, although remission this first time around seems to be on its way.

My dad has not had any C.T. Scans or anything since his first couple weeks of chemo, although his blood levels are very promising.  He has just had his third infusion. (There are 6 total). My parents also don't know when they will get together with his oncologist next to review how chemo is going. The way his doctor works it, they hear on Monday when they have to meet with the doc on Thursday.

From everything I read, an autologous stem cell transplant on first remission will be an important vehicle for reducing the likelihood that his cancer will recur since, as far as what I have read, he's at very high risk of recurrence. It concerns me that none of his doctors have said anything about it or any other post-chemo plan.

I don't want his cancer to come back. I'm really concerned about this.

Thank you for any insight!

 

 

Max Former Hodgkins Stage 3

SMLNHL

Liz,

Very generally, your fathers cancer is a quite indolent form (slow moving). Like most indolent strains, it generally responds well to first line therapies, of which surgical removal of the spleen is one of the most common. Your blood tests statement suggests that your father is similiarly improving nicely.

Relapse (from what I have read) is by no means certain, or even probable with his disease.  I have never required SCT, but from all I have read from others here, a discussion of SCT is usually based upon two things: (1) either relapse having already occured, or (2) an aggressive strain of disease that first-line therapy is not doing well against.

Depending on his AGE, it would be wise for you to get formal permission to see his medical records, and to speak to his doctor.  This was invaluable for me, since my parents were totally dibilitated before death, and I had to make all decisions regarding my mother.  If your parents are fully competent, you can still ask for access to his medical facts. It just depends on your parents' attitudes toward this. Only you would know if this were OK with them, but another technique is to ask questions of the doctors when they are in his room, with your father present.  An alert and competent patient can permit this to the doctor on a one-time basis. Some patients would appreciate this, others would not.  Base it on what you know about your father's personality and attitude toward privacy generally, or just ask him privately if you asking such questions would be comfortable for him or not.  I have taken even non-relatives to the oncologist in the past, and they insisted that I ask questions beforehand.  It varies by individual.

I suspect that the subject of SCT has not come up for the simple reason that the doctors suspect that it will not be necessary.

Attached is an article on his disease from one of the leading Oncology journals in the world.  Parts are technical, but most people can likely read most of it for benefit.  I could never find mention in the article regarding SCT for his strain of cancer, so it can not be a common thing, although it is an older article (2003).

You may want to skip down several pages to the section labeled "Treatment".

I hope he continues to have excellent labs, and fully recovers.  He is blessed tho have you researching these matters for him,

 http://www.bloodjournal.org/content/101/7/2464

max

Liz888

Max Former Hodgkins Stage 3 said:

SMLNHL

Liz,

Very generally, your fathers cancer is a quite indolent form (slow moving). Like most indolent strains, it generally responds well to first line therapies, of which surgical removal of the spleen is one of the most common. Your blood tests statement suggests that your father is similiarly improving nicely.

Relapse (from what I have read) is by no means certain, or even probable with his disease.  I have never required SCT, but from all I have read from others here, a discussion of SCT is usually based upon two things: (1) either relapse having already occured, or (2) an aggressive strain of disease that first-line therapy is not doing well against.

Depending on his AGE, it would be wise for you to get formal permission to see his medical records, and to speak to his doctor.  This was invaluable for me, since my parents were totally dibilitated before death, and I had to make all decisions regarding my mother.  If your parents are fully competent, you can still ask for access to his medical facts. It just depends on your parents' attitudes toward this. Only you would know if this were OK with them, but another technique is to ask questions of the doctors when they are in his room, with your father present.  An alert and competent patient can permit this to the doctor on a one-time basis. Some patients would appreciate this, others would not.  Base it on what you know about your father's personality and attitude toward privacy generally, or just ask him privately if you asking such questions would be comfortable for him or not.  I have taken even non-relatives to the oncologist in the past, and they insisted that I ask questions beforehand.  It varies by individual.

I suspect that the subject of SCT has not come up for the simple reason that the doctors suspect that it will not be necessary.

Attached is an article on his disease from one of the leading Oncology journals in the world.  Parts are technical, but most people can likely read most of it for benefit.  I could never find mention in the article regarding SCT for his strain of cancer, so it can not be a common thing, although it is an older article (2003).

You may want to skip down several pages to the section labeled "Treatment".

I hope he continues to have excellent labs, and fully recovers.  He is blessed tho have you researching these matters for him,

 http://www.bloodjournal.org/content/101/7/2464

max

I only wish he still had an indolent form of cancer.

Hi, Max!

My dad originally had an indolent form of NHL, and he did have his spleen removed, but his indolent cancer transformed to aggressive NHL. This happens, I've read, in about 10 percent of cases. Here's a link that discusses the phenomenon. (http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6334361)

So, I believe he now has DLBCL. Thankfully it's a type that responds very well to aggressive chemo.

Here are the things that keep me up at night:

a. He is nearly 70 years old and his original lymphoma was diagnosed at stage IV.  I presume this means the transformed version is also at stage IV. (I wish I could talk with his doctor!)

b. There is bone marrow involvement in his cancer (I don't know how much).

Actually, it's the bone marrow involvement that scares me the most. I've read that harvesting stem cells can be difficult if there is bone marrow involvement. (The thought of an allogeneic stem cell transplant makes me feel faint. I REALLY hope they're able to do an autologous one!)  I don't know if that remains true even if the patient is in remission.  He appears to be well on his way to remission, so, if being cancer-free makes that a non-issue, I would breathe easier.

The gaps in my understanding are gaping holes at this point and, frankly, it's very scary.

E

lindary

Liz888 said:

I only wish he still had an indolent form of cancer.

Hi, Max!

My dad originally had an indolent form of NHL, and he did have his spleen removed, but his indolent cancer transformed to aggressive NHL. This happens, I've read, in about 10 percent of cases. Here's a link that discusses the phenomenon. (http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6334361)

So, I believe he now has DLBCL. Thankfully it's a type that responds very well to aggressive chemo.

Here are the things that keep me up at night:

a. He is nearly 70 years old and his original lymphoma was diagnosed at stage IV.  I presume this means the transformed version is also at stage IV. (I wish I could talk with his doctor!)

b. There is bone marrow involvement in his cancer (I don't know how much).

Actually, it's the bone marrow involvement that scares me the most. I've read that harvesting stem cells can be difficult if there is bone marrow involvement. (The thought of an allogeneic stem cell transplant makes me feel faint. I REALLY hope they're able to do an autologous one!)  I don't know if that remains true even if the patient is in remission.  He appears to be well on his way to remission, so, if being cancer-free makes that a non-issue, I would breathe easier.

The gaps in my understanding are gaping holes at this point and, frankly, it's very scary.

E

My experience

Here is what I've been through, so far.

I am 65 and diagnosed with follicular non-Hdgkins lymphoma late Dec 2014, stage 4. Had a CT scan & pet scan before treatments started. Fairly large tumor is abdomen is what triggered the first CT scan. Before chemo I also ended up with pluerisy in one lung because the lymph system by that lung was compromised. This resulted in a drainage tube being installed in my chest to we could drain the fluids off befor ethey build up too much. Started R-CHOP in Jan 2015. Just before second treatment ended up in ER with perforated bowel. When that surgery was done a power port was also put in. After 4th chemo had anther CT scan whch showed major reduction in size of tumor. After 5th chemo and no fluids for about a month, chest tube for the pluerisy was removed. About 3 weeks after the last chemo I had another CT scan. It showed the tumor as still there, much samller but not gone. 

Added note, my oncologist works for a cancer clinic affiliated with a hospital nearby. The oncologist used to work at a very large hospital in the city, about an hour away. I met with her mentor at this hospital before chemo started. Through a series of missed calls and mis-communications it was almost a month before I had an appt to see him again to review the last CT scan. The verdict was to go with a second attack which may likely go into SCT. He is overseeing this round since the SCT will have to done there. 

So I just went through my first RICE treatment and in 2 weeks I go back for a second RICE. RICE is 3 days of getting drugs and then 18 days "recovery". I am guessing that about 3 or 4 weeks after that I will have another CT scan. This is all in preparation to SCT. I have read some posts where the second round of chemo achieved the desired results and the person did not do SCT. Not sure what I want to hope for. So everything aligns the "right" way I probably will be doing SCT in Oct. 

Your dad is a few years older than I am and you didn't say how active/healthy he was before he was diagnosed with the cancer. I do not consider my self an active person. Married with 3 kids and 4 grankids. I also still work. With the R-CHOP I worked 14 of the 15 workdays in a treatment cycle. Some at home and some in the office. With the RICE the dr does not want me being around a lot of people because this one hits the white cell & platelets counts much harder. I am lucky to have a job where I can work from home although there are situaitons where it is very frustrating to not be in the office. I brought my computers to the hospital when I did the RICE and plan to bring them if/when I do the the SCT. I have no idea if my lifestyle has helped me get through all of this easier or what.

So SCT was not mentioned when I started this trip but it came up when the first treatment didn't quite get it done. I hope this helps you a litte.

Sten

lindary said:

My experience

Here is what I've been through, so far.

I am 65 and diagnosed with follicular non-Hdgkins lymphoma late Dec 2014, stage 4. Had a CT scan & pet scan before treatments started. Fairly large tumor is abdomen is what triggered the first CT scan. Before chemo I also ended up with pluerisy in one lung because the lymph system by that lung was compromised. This resulted in a drainage tube being installed in my chest to we could drain the fluids off befor ethey build up too much. Started R-CHOP in Jan 2015. Just before second treatment ended up in ER with perforated bowel. When that surgery was done a power port was also put in. After 4th chemo had anther CT scan whch showed major reduction in size of tumor. After 5th chemo and no fluids for about a month, chest tube for the pluerisy was removed. About 3 weeks after the last chemo I had another CT scan. It showed the tumor as still there, much samller but not gone. 

Added note, my oncologist works for a cancer clinic affiliated with a hospital nearby. The oncologist used to work at a very large hospital in the city, about an hour away. I met with her mentor at this hospital before chemo started. Through a series of missed calls and mis-communications it was almost a month before I had an appt to see him again to review the last CT scan. The verdict was to go with a second attack which may likely go into SCT. He is overseeing this round since the SCT will have to done there. 

So I just went through my first RICE treatment and in 2 weeks I go back for a second RICE. RICE is 3 days of getting drugs and then 18 days "recovery". I am guessing that about 3 or 4 weeks after that I will have another CT scan. This is all in preparation to SCT. I have read some posts where the second round of chemo achieved the desired results and the person did not do SCT. Not sure what I want to hope for. So everything aligns the "right" way I probably will be doing SCT in Oct. 

Your dad is a few years older than I am and you didn't say how active/healthy he was before he was diagnosed with the cancer. I do not consider my self an active person. Married with 3 kids and 4 grankids. I also still work. With the R-CHOP I worked 14 of the 15 workdays in a treatment cycle. Some at home and some in the office. With the RICE the dr does not want me being around a lot of people because this one hits the white cell & platelets counts much harder. I am lucky to have a job where I can work from home although there are situaitons where it is very frustrating to not be in the office. I brought my computers to the hospital when I did the RICE and plan to bring them if/when I do the the SCT. I have no idea if my lifestyle has helped me get through all of this easier or what.

So SCT was not mentioned when I started this trip but it came up when the first treatment didn't quite get it done. I hope this helps you a litte.

My stem cell transplant

Hi Liz888,

I was 68 in 2012 when I got PCNSL, primary central nervous system lymphoma. My doctors talked early to me about stem cell transplant, perhaps at my first or second chemo. I was a bit old for it, but since I was in good shape for my age I could get it anyway. And I wanted it, because it gave me the best chance against the disease. 

The stem cell transplant was tough. My stomach was in disorder for about 3 months, and I was quite weak for months. But it was worth it.

Now I am NED (no evidence of disease) since late 2012.

Good luck to your father!

Sten

 

Max Former Hodgkins Stage 3

Liz888 said:

I only wish he still had an indolent form of cancer.

Hi, Max!

My dad originally had an indolent form of NHL, and he did have his spleen removed, but his indolent cancer transformed to aggressive NHL. This happens, I've read, in about 10 percent of cases. Here's a link that discusses the phenomenon. (http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6334361)

So, I believe he now has DLBCL. Thankfully it's a type that responds very well to aggressive chemo.

Here are the things that keep me up at night:

a. He is nearly 70 years old and his original lymphoma was diagnosed at stage IV.  I presume this means the transformed version is also at stage IV. (I wish I could talk with his doctor!)

b. There is bone marrow involvement in his cancer (I don't know how much).

Actually, it's the bone marrow involvement that scares me the most. I've read that harvesting stem cells can be difficult if there is bone marrow involvement. (The thought of an allogeneic stem cell transplant makes me feel faint. I REALLY hope they're able to do an autologous one!)  I don't know if that remains true even if the patient is in remission.  He appears to be well on his way to remission, so, if being cancer-free makes that a non-issue, I would breathe easier.

The gaps in my understanding are gaping holes at this point and, frankly, it's very scary.

E

Sorry

Liz,

In writing my first response, I totally missed your sentence about your dad having transitioned into a more aggressive form. But, except the discussion about SMZL and indolent disease generally, the rest of what I wrote seems applicable to your issues.

You say you "wish you could talk to his doctor."  Why can't you ? Have you asked your dad ? If you asked and he refused permission, then I guess for whatever reason he doesn't want you in the equation.  If you have not asked, maybe now is a good time ?

You have not written anywhere that anyone is planning a SCT for him, yet you write as if it is going to happen. 

Ironically and counter-intuitively, aggressive diseases are often more easily put in permanent remission than indolent ones; that is, they may less warrent a SCT than his initial SMZL did. It is mostly very indolent forms of lymphoma that doctors describe as "incurable' to their patients. I am not sure which ones, but I also believe that there are a few strains of lymphoma (there are around 40 commonly recognized strains) for which SCT is virtually never employed.

Regarding your statement about him formerly having been Stage IV, and assuming that he is therefore now Stage IV.  Possibly, but not necessarily.  If his first treatment had reduced him to a lower stage, and if there is no current cancer in the bone or other remote organ, his staging might have been lowered. You did say that "there is bone marrow involvement," but it is not clear if that was during his first diagnosis with the SMZL, or his newer diagnosis, or both.  But if he does have current bone marrow involvement then yes, he is still at Stage IV.

SCT is very traumatic to the body and massively expensive. A patient's heart, kidneys, and lungs will ordinarily have to be in very good condition to be considered for one.  Plus, their clinical history (strain of disease, reactions to  previous treatments, etc,.) must fit a matrix for SCT to be suitable.  Based upon what you have shared, your dad might be ideal for SCT, or he might not be.  Numerous specifics would have to be known to decide which is the case.  I personally would not be assuming that he is destined for SCT at this point, based on what you have provided thus far.  Regardless, we all hope for his full and speedy return to wellness,

max

 

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