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Mantel cell lymphoma

gmorr57's picture
gmorr57
Posts: 7
Joined: Aug 2012

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

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

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's picture
jimwins
Posts: 2021
Joined: Aug 2011

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's picture
allmost60
Posts: 3167
Joined: Jul 2010

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's picture
Steve_4133
Posts: 7
Joined: Nov 2011

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's picture
gmorr57
Posts: 7
Joined: Aug 2012

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
Posts: 929
Joined: Mar 2010

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's picture
gmorr57
Posts: 7
Joined: Aug 2012

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's picture
allmost60
Posts: 3167
Joined: Jul 2010

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's picture
illead
Posts: 524
Joined: Aug 2012

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's picture
jimwins
Posts: 2021
Joined: Aug 2011

Thank you Bill and Becky!

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

Hugs,

Jim

jimwins's picture
jimwins
Posts: 2021
Joined: Aug 2011

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. :)

gmorr57's picture
gmorr57
Posts: 7
Joined: Aug 2012

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's picture
onlytoday
Posts: 586
Joined: Jun 2010

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's picture
jimwins
Posts: 2021
Joined: Aug 2011

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's picture
allmost60
Posts: 3167
Joined: Jul 2010

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's picture
illead
Posts: 524
Joined: Aug 2012

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's picture
illead
Posts: 524
Joined: Aug 2012

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

gmorr57's picture
gmorr57
Posts: 7
Joined: Aug 2012

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's picture
allmost60
Posts: 3167
Joined: Jul 2010

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's picture
gmorr57
Posts: 7
Joined: Aug 2012

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

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Hi Gary,

I haven't been on for awhile. Sorry to hear about your diagnosis, though sounds like your treatments are effective--praying that you will continue to have minimal side effects and stem cell will go well.

Keep on keepin' on---praying for your remission!!! This is a great forum for support, caring and encouragement--along with humor ;)

Susan

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