Mantel cell lymphoma

Hello all I am new here and don't know much about what is going on. I was diagnosed with stage 3 mantel cell lymphoma May the 7th I have gone through 4 intrathecal Chemo's and 4 R-CHOP chemo's.I am doing very well with treatment not bad side effects but I woke up this morning at about 5:30 with the night sweats. Is this normal? I have had very few side effects till now. I go in the morning and get a new pet scan to see how it is going but was hoping to get an idea what to expect. thanks

Gary
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Comments

  • vinny59
    vinny59 Member Posts: 1,032
    welcome
    Hi Gary, welcome to the site, I had NHL B cell lymphoma, went through 8 cycles of R-Chop, Hopefully the PET scan will prove to be negative. I still have some activity in my hip bone that they are watching, if this grows, it would be radiation for me. I know there are people on this site that had Mantel cell lymphoma, they should be able to help you out more then me......... Vinny
  • jimwins
    jimwins Member Posts: 2,107
    Welcome
    Hi Gary and welcome to the site. You will find wonderful and supportive
    folks here. I'm glad you're doing well with your chemo side effects and hope
    you get great news from your scans.

    Regarding the sweating, I'd suppose (in my non-expert opinion), the sweats are a result of the chemo. I would discuss this with your medical team for sure.

    Though my cancer is different from yours (Diffuse Large B Cell), my chemo
    was R-EPOCH which is very similar to R-CHOP. I know there are mantle
    cell survivors here and they will chime in soon I think.

    I wish you the best on your results. Please come back and keep us updated.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
  • allmost60
    allmost60 Member Posts: 3,178
    Welcome..
    Hi Gary,
    I experienced sweats while doing my chemo treatments. Mine weren't necessarily at night, but more so off and on at all times of the day or night. I didn't do R-CHOP and my sub type of Lymphoma is different than yours, but my onc told me that the prednisone we all take with our chemo treatments can cause sweating/hot flashes. Since finishing chemo..(Dec 2010) I no longer have sweats or the hot flashes...hopefully it will be the same for you. Good luck tomorrow with your PET scan and please share back your results.
    Best wishes...Sue
    (Follicular NHL-stage3-grade2-typeA-dx June 2010) CVP-R chemo-6 rounds and now finishing up with a 2 year Rituxan maint..(3 infusions left). Cancer considered stable. Next scan in March 2013.
  • Steve_4133
    Steve_4133 Member Posts: 7 Member
    allmost60 said:

    Welcome..
    Hi Gary,
    I experienced sweats while doing my chemo treatments. Mine weren't necessarily at night, but more so off and on at all times of the day or night. I didn't do R-CHOP and my sub type of Lymphoma is different than yours, but my onc told me that the prednisone we all take with our chemo treatments can cause sweating/hot flashes. Since finishing chemo..(Dec 2010) I no longer have sweats or the hot flashes...hopefully it will be the same for you. Good luck tomorrow with your PET scan and please share back your results.
    Best wishes...Sue
    (Follicular NHL-stage3-grade2-typeA-dx June 2010) CVP-R chemo-6 rounds and now finishing up with a 2 year Rituxan maint..(3 infusions left). Cancer considered stable. Next scan in March 2013.

    Hi Gary
    I was diagnosed Oct 18 2011 with MCL. I started with 6 treatments of R-Chop and then 1 treatment of R-Dhap. During my treatments yes I had night sweats all the time with sometime the sheets would be soaked. I then went in for a autologous stem cell transplant. Before the transplant I had high dose Beam chemo for 6 days and then on the 7th day I was admitted to the hospital. I stayed for 2 weeks. I had all the side effects they talk about with mouth sores, diarrhea, fever and some I can't remember ( Chemo brain ). It was no picnic but I made it. I just got out of the hospital on July 4 and had a PET scan a month later and my doc said I'm in remission- no sign of cancer. I haven't had chemo since June 18 but I still have issues from the chemo and of course no hair yet. Well good luck and keep postings.
    Steve

    P.S. I forgot to tell you the night sweats have stopped.
  • gmorr57
    gmorr57 Member Posts: 7

    Hi Gary
    I was diagnosed Oct 18 2011 with MCL. I started with 6 treatments of R-Chop and then 1 treatment of R-Dhap. During my treatments yes I had night sweats all the time with sometime the sheets would be soaked. I then went in for a autologous stem cell transplant. Before the transplant I had high dose Beam chemo for 6 days and then on the 7th day I was admitted to the hospital. I stayed for 2 weeks. I had all the side effects they talk about with mouth sores, diarrhea, fever and some I can't remember ( Chemo brain ). It was no picnic but I made it. I just got out of the hospital on July 4 and had a PET scan a month later and my doc said I'm in remission- no sign of cancer. I haven't had chemo since June 18 but I still have issues from the chemo and of course no hair yet. Well good luck and keep postings.
    Steve

    P.S. I forgot to tell you the night sweats have stopped.

    Hey everyone, thanks for
    Hey everyone, thanks for replying. I am doing well I think my symptoms have been mild compared to a lot of people. I am scheduled for 6 rounds of r-chop as I said I have had 4 rounds so far but last night was the first time for the night sweats I go in tomorrow for a pet scan and see my oncologist Tuesday I will update then and let you know how it goes.... oh the beard and hair in the photo yup its gone :-)
  • miss maggie
    miss maggie Member Posts: 929

    Hi Gary
    I was diagnosed Oct 18 2011 with MCL. I started with 6 treatments of R-Chop and then 1 treatment of R-Dhap. During my treatments yes I had night sweats all the time with sometime the sheets would be soaked. I then went in for a autologous stem cell transplant. Before the transplant I had high dose Beam chemo for 6 days and then on the 7th day I was admitted to the hospital. I stayed for 2 weeks. I had all the side effects they talk about with mouth sores, diarrhea, fever and some I can't remember ( Chemo brain ). It was no picnic but I made it. I just got out of the hospital on July 4 and had a PET scan a month later and my doc said I'm in remission- no sign of cancer. I haven't had chemo since June 18 but I still have issues from the chemo and of course no hair yet. Well good luck and keep postings.
    Steve

    P.S. I forgot to tell you the night sweats have stopped.

    MCL
    Dear Steve

    I was very impressed by your post to Gary. It was so inspiring and full of positive
    energy. I see how much you went through. Just to reach remission made it all worth
    while.

    I am sure you inspired Gary. It was so kind of you to give him a complete update
    on all your treatments.

    To Steve, I hope you continue to be in remission. Gary, Everyone on this site is there
    for you.

    I do not have MCL. I have been in remission for about 2 1/2 years. There is hope.

    Hugs. Maggie
  • gmorr57
    gmorr57 Member Posts: 7

    MCL
    Dear Steve

    I was very impressed by your post to Gary. It was so inspiring and full of positive
    energy. I see how much you went through. Just to reach remission made it all worth
    while.

    I am sure you inspired Gary. It was so kind of you to give him a complete update
    on all your treatments.

    To Steve, I hope you continue to be in remission. Gary, Everyone on this site is there
    for you.

    I do not have MCL. I have been in remission for about 2 1/2 years. There is hope.

    Hugs. Maggie

    here is my update
    Got the

    here is my update
    Got the PET scan done Monday morning, ate breakfast and went back to the room. About 4:00 pm I woke up with a 102 temp. Went to the ER and stayed until around midnight. They took blood, ran cultures, x-rayed, and at the end of it all, couldn't find anything. They said that my white count was good, and my temp was down so take tylenol and see the oncologist Tuesday-which we did. Oncologist said I has a mild case of pneumonia and prescribed some high-powered antibiotics which should take care of it. The pneumonia showed up on the PET scan, but not the chest xray...
    The GOOD NEWS is that the 4 rounds of R-CHOP chemo have shrunk my tumors 60-70%. I will need 2 more rounds and then get ready for the stem-cell transplant of my bone marrow. Oncologist was VERY pleased with progress! We can see light at the end of the tunnel at last!!

    Gary
  • allmost60
    allmost60 Member Posts: 3,178
    gmorr57 said:

    here is my update
    Got the

    here is my update
    Got the PET scan done Monday morning, ate breakfast and went back to the room. About 4:00 pm I woke up with a 102 temp. Went to the ER and stayed until around midnight. They took blood, ran cultures, x-rayed, and at the end of it all, couldn't find anything. They said that my white count was good, and my temp was down so take tylenol and see the oncologist Tuesday-which we did. Oncologist said I has a mild case of pneumonia and prescribed some high-powered antibiotics which should take care of it. The pneumonia showed up on the PET scan, but not the chest xray...
    The GOOD NEWS is that the 4 rounds of R-CHOP chemo have shrunk my tumors 60-70%. I will need 2 more rounds and then get ready for the stem-cell transplant of my bone marrow. Oncologist was VERY pleased with progress! We can see light at the end of the tunnel at last!!

    Gary

    Great!
    Goodmorning Gary,
    Thats great news....(not the pneumonia or hospital visit)...but shrinking of the tumors! "Yeah"!!! After my 3rd round of chemo my Ct Scan showed 40% shrinkage and after 6 rounds all tumors had completely shrunk except one pesky tumor under the clavical bone. I was so happy,just as you are! That light at the end tunel is indeed a wonderful feeling. Thanks so much for sharing...good news is always nice to hear...now rest and get rid of the pneumonia. Best wishes..Sue
    (FNHL grade2-stage3-typeA-Dx June 2010-age 61
  • illead
    illead Member Posts: 884 Member
    allmost60 said:

    Great!
    Goodmorning Gary,
    Thats great news....(not the pneumonia or hospital visit)...but shrinking of the tumors! "Yeah"!!! After my 3rd round of chemo my Ct Scan showed 40% shrinkage and after 6 rounds all tumors had completely shrunk except one pesky tumor under the clavical bone. I was so happy,just as you are! That light at the end tunel is indeed a wonderful feeling. Thanks so much for sharing...good news is always nice to hear...now rest and get rid of the pneumonia. Best wishes..Sue
    (FNHL grade2-stage3-typeA-Dx June 2010-age 61

    Our Story
    Hi to everyone,
    My husband was diagnosed July '11 with MCL. He was diagnosed at Stage 4, which is common. Of course they figure he had it for a year or more before. The symptoms were mainly being tired and loss of appetite. He also had hives which got worse and worse. That is supposedly not a symptom but others have said they had them also and his doctor was interested in that. Two days after his diagnosis was when the fevers, nite sweats and rigors started. Horrible! He went downhill drastically and rapidly, even needing a wheelchair. They couldn't start his chemo for 2 more weeks because of ins. pre authorization etc. His chemo was a fairly new one, Bendamustine with rituxan. He then continued the infusions every 3 weeks and the last one was in January. He made improvement with each treatment. There were no side effects at all and he did not lose his hair. He had a CT scan in Feb and everything was gone. He is on rituxan maintenance every 2 months for 2 yrs. and had another CT scan this month and is still in remission. He feels and looks better than he has in a few years. We are now waiting for ins. authorization for an autologous stem cell transplant at Cedars Sinai. Our doctor says that they are really studying MCL in Germany particularly. They were the ones who introduced bedamustine I think. He says that they are focusing on MCL as they believe many had it in the past before it's discovery and also they pretty much know everything about the other NHLs. So we all have a lot to be optimistic about. Our thoughts are with you all, Bill and Becky
  • jimwins
    jimwins Member Posts: 2,107
    gmorr57 said:

    here is my update
    Got the

    here is my update
    Got the PET scan done Monday morning, ate breakfast and went back to the room. About 4:00 pm I woke up with a 102 temp. Went to the ER and stayed until around midnight. They took blood, ran cultures, x-rayed, and at the end of it all, couldn't find anything. They said that my white count was good, and my temp was down so take tylenol and see the oncologist Tuesday-which we did. Oncologist said I has a mild case of pneumonia and prescribed some high-powered antibiotics which should take care of it. The pneumonia showed up on the PET scan, but not the chest xray...
    The GOOD NEWS is that the 4 rounds of R-CHOP chemo have shrunk my tumors 60-70%. I will need 2 more rounds and then get ready for the stem-cell transplant of my bone marrow. Oncologist was VERY pleased with progress! We can see light at the end of the tunnel at last!!

    Gary

    Good news ☺
    Hi Gary,

    Great news that the chemo is working! Sorry about the pneumonia
    but the antibiotics should clear that up.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
  • jimwins
    jimwins Member Posts: 2,107
    illead said:

    Our Story
    Hi to everyone,
    My husband was diagnosed July '11 with MCL. He was diagnosed at Stage 4, which is common. Of course they figure he had it for a year or more before. The symptoms were mainly being tired and loss of appetite. He also had hives which got worse and worse. That is supposedly not a symptom but others have said they had them also and his doctor was interested in that. Two days after his diagnosis was when the fevers, nite sweats and rigors started. Horrible! He went downhill drastically and rapidly, even needing a wheelchair. They couldn't start his chemo for 2 more weeks because of ins. pre authorization etc. His chemo was a fairly new one, Bendamustine with rituxan. He then continued the infusions every 3 weeks and the last one was in January. He made improvement with each treatment. There were no side effects at all and he did not lose his hair. He had a CT scan in Feb and everything was gone. He is on rituxan maintenance every 2 months for 2 yrs. and had another CT scan this month and is still in remission. He feels and looks better than he has in a few years. We are now waiting for ins. authorization for an autologous stem cell transplant at Cedars Sinai. Our doctor says that they are really studying MCL in Germany particularly. They were the ones who introduced bedamustine I think. He says that they are focusing on MCL as they believe many had it in the past before it's discovery and also they pretty much know everything about the other NHLs. So we all have a lot to be optimistic about. Our thoughts are with you all, Bill and Becky

    Hi and welcome!
    Thank you Bill and Becky!

    So glad Bill is doing well. Keep us posted and feel free
    to share/support here anytime.

    Hugs,

    Jim
  • gmorr57
    gmorr57 Member Posts: 7
    jimwins said:

    Good news ☺
    Hi Gary,

    Great news that the chemo is working! Sorry about the pneumonia
    but the antibiotics should clear that up.

    Hugs and positive thoughts,

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

    well it is Sept the 6th and
    well it is Sept the 6th and we are back home after chemo #5 the pneumonia is gone and the night sweats are much better. I am on my way down from the r-chop but next week will be better keeping a positive attitude and looking forward. Gary :-)
  • onlytoday
    onlytoday Member Posts: 609 Member
    gmorr57 said:

    well it is Sept the 6th and
    well it is Sept the 6th and we are back home after chemo #5 the pneumonia is gone and the night sweats are much better. I am on my way down from the r-chop but next week will be better keeping a positive attitude and looking forward. Gary :-)

    Go(od to hear!
    Gary,

    Welcome to this sight- just saw all the postings. Glad to hear that things are looking up and the pneumonia is gone and the chemo is working. I have Nodal Marginal Zone stage IV so my journey is different than yours but we all can still relate to the roller coaster ride of this stuff!

    Love your positive energy. Stay the course- you are doing great! Keep us posted on your progress.

    Hugs and prayers to you,
    Donna
  • jimwins
    jimwins Member Posts: 2,107
    gmorr57 said:

    well it is Sept the 6th and
    well it is Sept the 6th and we are back home after chemo #5 the pneumonia is gone and the night sweats are much better. I am on my way down from the r-chop but next week will be better keeping a positive attitude and looking forward. Gary :-)

    Great
    That's great, Gary. I agree about the positive attitude - it helps.
    You are getting closer to the finish line - yay !

    Hugs and positive thoughts,

    Jim
  • allmost60
    allmost60 Member Posts: 3,178
    gmorr57 said:

    well it is Sept the 6th and
    well it is Sept the 6th and we are back home after chemo #5 the pneumonia is gone and the night sweats are much better. I am on my way down from the r-chop but next week will be better keeping a positive attitude and looking forward. Gary :-)

    "Yeah"...
    Hi Gary,
    Thanks so much for sharing your good positive news! I love hearing when things go good for a friend. Sounds like your attitude is great, and we all know how important a good attitude is! Blessing to you...hang in there friend...Sue
  • illead
    illead Member Posts: 884 Member
    allmost60 said:

    "Yeah"...
    Hi Gary,
    Thanks so much for sharing your good positive news! I love hearing when things go good for a friend. Sounds like your attitude is great, and we all know how important a good attitude is! Blessing to you...hang in there friend...Sue

    So encouraging
    That is wonderful news Gary and you too Donna, thank you for sharing. Thank you also Bill, you are on other forums too and always so encouraging. On another forum I read where a woman was diagnosed with MCL at 72 and has been in remission for 16 years! Now that made my day. Continued best wishes Becky and Bill
  • illead
    illead Member Posts: 884 Member
    illead said:

    So encouraging
    That is wonderful news Gary and you too Donna, thank you for sharing. Thank you also Bill, you are on other forums too and always so encouraging. On another forum I read where a woman was diagnosed with MCL at 72 and has been in remission for 16 years! Now that made my day. Continued best wishes Becky and Bill

    Jim
    Sorry Jim, I meant you when I said Bill, It comes natural to say Bill, ha ha. Becky
  • gmorr57
    gmorr57 Member Posts: 7
    illead said:

    Jim
    Sorry Jim, I meant you when I said Bill, It comes natural to say Bill, ha ha. Becky

    Monday the 10th I am at that
    Monday the 10th I am at that point in the cycle that everything hurts, It started yesterday my skin hurts on my back and shoulders so today I will lay low and try to sleep through the worst of it ...Tomorrow will be a better day at least I can predict what is coming now Thanks everyone for the encouragement it really helps to have someone going through it too

    Gary
  • allmost60
    allmost60 Member Posts: 3,178
    gmorr57 said:

    Monday the 10th I am at that
    Monday the 10th I am at that point in the cycle that everything hurts, It started yesterday my skin hurts on my back and shoulders so today I will lay low and try to sleep through the worst of it ...Tomorrow will be a better day at least I can predict what is coming now Thanks everyone for the encouragement it really helps to have someone going through it too

    Gary

    Sounds about right...
    Hi Gary,
    For me...the first 10 days or so after my chemo..(CVP-R) I'd usually feel pretty worn out and sore. The first 5 days after,while having to take the prednisone, I was not as sore, but once the prednisone was finished my whole body was "VERY" sensitive to touch, and extremely achey...even sitting on the toilet would hurt my bottom. By week 2 things improved..not greatly...but a little better. As each treatment passes, you will definetely learn what to expect. The chemo does have a cumulative affect as treatments progress, so you will learn that resting will be needed along with plenty of fluids. Take care friend and remember the end goal..."remission"...it will all be fine. Have a good week Gary. Best wishes...Sue
  • gmorr57
    gmorr57 Member Posts: 7
    allmost60 said:

    Sounds about right...
    Hi Gary,
    For me...the first 10 days or so after my chemo..(CVP-R) I'd usually feel pretty worn out and sore. The first 5 days after,while having to take the prednisone, I was not as sore, but once the prednisone was finished my whole body was "VERY" sensitive to touch, and extremely achey...even sitting on the toilet would hurt my bottom. By week 2 things improved..not greatly...but a little better. As each treatment passes, you will definetely learn what to expect. The chemo does have a cumulative affect as treatments progress, so you will learn that resting will be needed along with plenty of fluids. Take care friend and remember the end goal..."remission"...it will all be fine. Have a good week Gary. Best wishes...Sue

    Thanks Sue, If all goes
    Thanks Sue, If all goes according to the plan I have one more cycle of r-chop on the 24th of this month then middle of next month another pet scan to see where we are then (the last one came back that the tumors had shrunk 60 - 70 % which was very good news)then stem cell / bone marrow we are shooting for remission trying to keep a positive attitude and moving forward

    Gary