R-Chop - the results are in...

KatMat

Hello...
My husband was diagnosed with CLL (age 40) in October 2011 which transformed into Large Diffuse B Cell Lymphoma in February of this year. He has completed 6 rounds of R-Chop at the end of June. He tolerated treatment very well and was feeling pretty good until recently when he says his head feels weird. He just feels off. His energy level is pretty good. I am not sure if it is from the R-Chop. It also has been extremely hot 100 degrees and humid here which I assume affects him. He was never one to like the heat anyway. Has any who has undergone R-Chop felt strange afterwards? He is getting a blood test done today to make sure his numbers are OK.

Thank you for feed back.

jimwins

Welcome
Welcome KatMat and sorry you have to be here. I'm glad your husband has completed
his chemo and has that behind him now. I had Diffuse B Cell Lymphoma and had
6 rounds of R-EPOCH which is similar to the R-CHOP.

By his head feeling weird, do you mean mentally? Many complain of "chemo brain" after
chemo therapy. I placed a link below to info at the Mayo Clinic.

He is still very recently on the other side of chemo so will probably have some
side effects for awhile. The main one for me was and still is fatigue.
I had/have "chemo brain" but it is showing signs of some improvement here recently.
Some of my numbers (blood work) are still not normal but are considered okay
for someone having recent chemotherapy (I finished in Oct. 2011).

Chemo does a real number on the body and it will take time for him to recover fully.
Please know that you guys are not alone and this site has wonderfully supportive
and caring folks here. I'm sure others will chime in shortly.

Here's info on chemo brain:

Chemo Brain - Mayo Clinic

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.

KatMat

jimwins said:

Welcome
Welcome KatMat and sorry you have to be here. I'm glad your husband has completed
his chemo and has that behind him now. I had Diffuse B Cell Lymphoma and had
6 rounds of R-EPOCH which is similar to the R-CHOP.

By his head feeling weird, do you mean mentally? Many complain of "chemo brain" after
chemo therapy. I placed a link below to info at the Mayo Clinic.

He is still very recently on the other side of chemo so will probably have some
side effects for awhile. The main one for me was and still is fatigue.
I had/have "chemo brain" but it is showing signs of some improvement here recently.
Some of my numbers (blood work) are still not normal but are considered okay
for someone having recent chemotherapy (I finished in Oct. 2011).

Chemo does a real number on the body and it will take time for him to recover fully.
Please know that you guys are not alone and this site has wonderfully supportive
and caring folks here. I'm sure others will chime in shortly.

Here's info on chemo brain:

Chemo Brain - Mayo Clinic

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.

Hi Jim,
Thank you for the
Hi Jim,
Thank you for the reply and congratulations on the remission.

He said he sometimes feels light-headed and it was hard to explain. I am not sure he is experiencing chemo brain but I will send him that link. We have been going to the Mayo Clinic for all treatments.

He is scheduled for a bone marrow and PET scan at the end of the month to restage him and then a bone marrow transplant using his own marrow first to take care of the lymphoma followed by a donor transplant to take care of the CLL.

You sure learn a lot about things you never wished you had to know.

I am happy to be a member here. It's good to have support from whereever you can get it.

ROF

Heat and energy
KatMat

In May I finished 10 rounds of R-CHOP...had to have 10 at reduced dosage due to extensive bone marrow involvement. I had nodal-marginal zone lymphoma and it is now in remission. I live in Northern California in an area that averages 40 days a year over 100 degrees. We have lived here almost 40 years and heat never really bothered me. However this year once the temp hits the lower 90s I'm inside sitting...don't even want to get in the pool. I have also noticed that I really feel good in the mornings and then by early afternoon have no energy or desire to do anything. I had only minor problems with the R-CHOP but am having trouble dealing with the after effects.

Good Luck

Chris

KatMat

ROF said:

Heat and energy
KatMat

In May I finished 10 rounds of R-CHOP...had to have 10 at reduced dosage due to extensive bone marrow involvement. I had nodal-marginal zone lymphoma and it is now in remission. I live in Northern California in an area that averages 40 days a year over 100 degrees. We have lived here almost 40 years and heat never really bothered me. However this year once the temp hits the lower 90s I'm inside sitting...don't even want to get in the pool. I have also noticed that I really feel good in the mornings and then by early afternoon have no energy or desire to do anything. I had only minor problems with the R-CHOP but am having trouble dealing with the after effects.

Good Luck

Chris

Hi Chris,
Happy to hear you
Hi Chris,
Happy to hear you are in remissions.

Thank you for your reply. I will share with my husband. I think it is a heat/humidity thing and the fact that our air conditioner at home isn't working great. We get a new one today.

Best to you.

Katie

allmost60

Welcome...
Hi Katie,
I did a different chemo(considered less harsh than the R-CHOP)and also have a different subtype of Lymphoma than your hubby. I was diagnosed with Follicular NHL-stage3-grade2-typeA in June of 2010. My chemo was CVP-R. I did 6 rounds(finished in Dec 2010) and then started Rituxan maint(Feb 2011) which I'll finish in Feb 2013. Since finishing chemo I cannot tolerate the heat. I understand what your husband means when he says.. "just feels off". It's hard to explain, but we are definetely not the same person as before chemo/cancer. My energy level is still not up to par, but very doable. I do my best in the morning and early afternoon, but come evening I'm pretty much spent with little energy left to spare. I'm 61, no spring chicken forsure, but at times feel like I'm much older. My Onc calls it my "new normal" and says to get use to it...easy for him to say..ha! I think most folks here will tell you it's not unusual to have "strange feelings" for months/years to come after finishing with chemo. Some do better than others and say they feel awesome...that would be a stretch for me to say however. Take things one day at a time and just have hubby listen to what his body is telling him. In time he will start to feel better and better...maybe not "perfect", but certainly better. Best wishes to you both.... Sue

KatMat

allmost60 said:

Welcome...
Hi Katie,
I did a different chemo(considered less harsh than the R-CHOP)and also have a different subtype of Lymphoma than your hubby. I was diagnosed with Follicular NHL-stage3-grade2-typeA in June of 2010. My chemo was CVP-R. I did 6 rounds(finished in Dec 2010) and then started Rituxan maint(Feb 2011) which I'll finish in Feb 2013. Since finishing chemo I cannot tolerate the heat. I understand what your husband means when he says.. "just feels off". It's hard to explain, but we are definetely not the same person as before chemo/cancer. My energy level is still not up to par, but very doable. I do my best in the morning and early afternoon, but come evening I'm pretty much spent with little energy left to spare. I'm 61, no spring chicken forsure, but at times feel like I'm much older. My Onc calls it my "new normal" and says to get use to it...easy for him to say..ha! I think most folks here will tell you it's not unusual to have "strange feelings" for months/years to come after finishing with chemo. Some do better than others and say they feel awesome...that would be a stretch for me to say however. Take things one day at a time and just have hubby listen to what his body is telling him. In time he will start to feel better and better...maybe not "perfect", but certainly better. Best wishes to you both.... Sue

Thanks for the feedback Sue.
Thanks for the feedback Sue. I hope you are continuing to do well.

honeydiper

jimwins said:

Welcome
Welcome KatMat and sorry you have to be here. I'm glad your husband has completed
his chemo and has that behind him now. I had Diffuse B Cell Lymphoma and had
6 rounds of R-EPOCH which is similar to the R-CHOP.

By his head feeling weird, do you mean mentally? Many complain of "chemo brain" after
chemo therapy. I placed a link below to info at the Mayo Clinic.

He is still very recently on the other side of chemo so will probably have some
side effects for awhile. The main one for me was and still is fatigue.
I had/have "chemo brain" but it is showing signs of some improvement here recently.
Some of my numbers (blood work) are still not normal but are considered okay
for someone having recent chemotherapy (I finished in Oct. 2011).

Chemo does a real number on the body and it will take time for him to recover fully.
Please know that you guys are not alone and this site has wonderfully supportive
and caring folks here. I'm sure others will chime in shortly.

Here's info on chemo brain:

Chemo Brain - Mayo Clinic

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.

Feeling the same
Jim, Glad you are still with us. I too had Diffuse B-cell. Mine was a very aggresive rare form. I had 6 rounds of R-Chop and went thru a stem cell transplant with 6 more rounds of rituxin.The strong dose of chemo 7/24 before the transplant relly did a job on me it takes everything out of you.All your childhood shots and body functions are gone. But i am here that is what counts. My energy level has never come back fully. Age might play a part in it as well. Still think i am 18 ha ha.
Chemo brain without a doubt i do not remember a thing. I have to right everything down.
I also have neropithy in my hands. Yes chemo does a job on us but without it we would not be here.
I am 3yrs in remission. My blood work comes back good. Nov i have to go for Pet/CT scans.
Keep up the good work!
Regards,
Charlie

jimwins

honeydiper said:

Feeling the same
Jim, Glad you are still with us. I too had Diffuse B-cell. Mine was a very aggresive rare form. I had 6 rounds of R-Chop and went thru a stem cell transplant with 6 more rounds of rituxin.The strong dose of chemo 7/24 before the transplant relly did a job on me it takes everything out of you.All your childhood shots and body functions are gone. But i am here that is what counts. My energy level has never come back fully. Age might play a part in it as well. Still think i am 18 ha ha.
Chemo brain without a doubt i do not remember a thing. I have to right everything down.
I also have neropithy in my hands. Yes chemo does a job on us but without it we would not be here.
I am 3yrs in remission. My blood work comes back good. Nov i have to go for Pet/CT scans.
Keep up the good work!
Regards,
Charlie

Welcome Charlie
Hi Charlie and welcome to the site.

Congratulations on 3 year remisson and thank you for your
words of encouragement. Please feel free to participate
and share here all you like! Lots of good folks here.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.

AngeH

I was told...
I was told by my doc that after I still might have "swings" kind of. Once I'd been a month out from my last (6th) RCHOP round, I did have about a week or so where I didn't feel right. My energy level dropped, and my appetite went back to almost what I'd eat during the rounds (which was mostly fresh fruits, less heavy foods, and basically grazing). I never forced myself to do anything, except for my "me" time (30 minute daily walk around the park). It took a few days, but then it just kind of went away on it's own. I did worry, "Oh my Gods, it's back!" for about a minute. When I next saw my oncologist, the day I was told I had gotten complete remission, I told him about this. He said it was normal, and would probably happen off and on, but should fade away over time. It just takes a lot of time, and patience, for your body to recover. Even now, I feel like I've gone back in time 15 years. I've never felt so good before! I'm afraid of it coming to an end. Of course, everyone's recovery varies. But, if it really becomes bothersome, never be afraid to call the doc.

KatMat

AngeH said:

I was told...
I was told by my doc that after I still might have "swings" kind of. Once I'd been a month out from my last (6th) RCHOP round, I did have about a week or so where I didn't feel right. My energy level dropped, and my appetite went back to almost what I'd eat during the rounds (which was mostly fresh fruits, less heavy foods, and basically grazing). I never forced myself to do anything, except for my "me" time (30 minute daily walk around the park). It took a few days, but then it just kind of went away on it's own. I did worry, "Oh my Gods, it's back!" for about a minute. When I next saw my oncologist, the day I was told I had gotten complete remission, I told him about this. He said it was normal, and would probably happen off and on, but should fade away over time. It just takes a lot of time, and patience, for your body to recover. Even now, I feel like I've gone back in time 15 years. I've never felt so good before! I'm afraid of it coming to an end. Of course, everyone's recovery varies. But, if it really becomes bothersome, never be afraid to call the doc.

Thanks for the feedback AngeH. I am glad you are doing well.

My husband's PET scan results showed partial response to R-Chop. His lymph nodes are about 1 centimeter which is small to me so I am thinking the R-ICE will do the trick. At the end of June he lymph nodes were normal size so perhaps they just need to be put in their place with the R-ICE treament and then he moves seemlessly to auto bone marrow transplant. On the good side, the bone marrow test was good and showed only 30% cancer cells as opposed to the 90% previously.

it sure is a long road......

I very much appreciated everyone who posts here. It is helpful to know there is a support group out here.

jimwins

KatMat said:

Thanks for the feedback AngeH. I am glad you are doing well.

My husband's PET scan results showed partial response to R-Chop. His lymph nodes are about 1 centimeter which is small to me so I am thinking the R-ICE will do the trick. At the end of June he lymph nodes were normal size so perhaps they just need to be put in their place with the R-ICE treament and then he moves seemlessly to auto bone marrow transplant. On the good side, the bone marrow test was good and showed only 30% cancer cells as opposed to the 90% previously.

it sure is a long road......

I very much appreciated everyone who posts here. It is helpful to know there is a support group out here.

Hi KatMat
Hey KatMat and thanks for updating.

I'm glad your husband is showing response and hope the R-ICE will
kick cancer butt! Keeping you guys in our thoughts.

Hugs,

Jim

KatMat

jimwins said:

Hi KatMat
Hey KatMat and thanks for updating.

I'm glad your husband is showing response and hope the R-ICE will
kick cancer butt! Keeping you guys in our thoughts.

Hugs,

Jim

Thanks
Thanks Jim

The doc said they should know if he is responding after the 1st treatment. Must be pretty powerful stuff. So far he is doing OK. Only a little tummy queasiness and tired of course.

anliperez915

KatMat said:

Thanks for the feedback AngeH. I am glad you are doing well.

My husband's PET scan results showed partial response to R-Chop. His lymph nodes are about 1 centimeter which is small to me so I am thinking the R-ICE will do the trick. At the end of June he lymph nodes were normal size so perhaps they just need to be put in their place with the R-ICE treament and then he moves seemlessly to auto bone marrow transplant. On the good side, the bone marrow test was good and showed only 30% cancer cells as opposed to the 90% previously.

it sure is a long road......

I very much appreciated everyone who posts here. It is helpful to know there is a support group out here.

Hi Kat
Hi Kat,
It's sound like the R-ICE is helping your hubby!
Sometimes it can feel like (when is this going to end), I certainly feel like that sometimes. I just wish that I could just do another chemo regimen to get rid of the cancer faster but I have to be patient with the one that I'm doing and just hope for the best. Keep the faith, I'm sure it will all be over before you know it and you both will be free of the cancer. Take care and positive thoughts your way!

Sincerely,
Liz

AngeH

KatMat said:

Thanks for the feedback AngeH. I am glad you are doing well.

My husband's PET scan results showed partial response to R-Chop. His lymph nodes are about 1 centimeter which is small to me so I am thinking the R-ICE will do the trick. At the end of June he lymph nodes were normal size so perhaps they just need to be put in their place with the R-ICE treament and then he moves seemlessly to auto bone marrow transplant. On the good side, the bone marrow test was good and showed only 30% cancer cells as opposed to the 90% previously.

it sure is a long road......

I very much appreciated everyone who posts here. It is helpful to know there is a support group out here.

You're Welcome
I'm glad that the R-ICE is working then. Every time I had a CT or something done and I found that the nodes were shrinking, I was always like "YAAYY!!". What a great feeling! A long road, but it doesn't go on forever. Take care!