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Mantle Cell Lymphoma and R-CHOP

Babsal1958
Posts: 5
Joined: Feb 2014

Hello Everyone,

My name is Angelia. I'm 56 years old. I was recently diagnosed with Mantle Cell Lymphoma stage 3 on Jan. 24, 2014.

I also have a history of Lupus, Fibromyalgia, Sjogren's, Raynard's and Plumonary Fibrosis.

I started the R-CHOP regimine on March 3, 2014. I will be recieving this treatment every 21 days for 8 cycles and then continue on Ribtuxan every 8 weeks after.

I'm doing pretty well after the first chemo treatment. The only complaint I have so far is abdominal cramping and diarrhea with mild headaches.

My question is: What other symptoms should I expect over the next days and weeks with this type of treatment? I was told that I will lose all of my hair before the second treatment but, that really doesn't bother me so much since I know it will grow back.

Thank you in advance and I look forward to corresponding with others on this site.

Angelia

illead's picture
illead
Posts: 505
Joined: Aug 2012

We are happy to have you join us.  You will find that we are a very caring group and definitely here for each other.  You can click on anyone's blue square and find out their story if they have posted it.  My husband Bill also has MCL.  He was diagnosed July '11.  He was given Bendamustine  (Treanda) and Rituxan,  Benda is fairly new, and I am of the thought that it is the preferred chemo for MCL, but I'm no doctor, and I am sure you are in good hands.  I can't tell you about side effects of R-CHOP but many have had it on here and will be able to help you .  Bill had no side effects on Benda and no hair loss (of course as you can tell it wouldn't have mattered muchSmile).  Sadly we just found out that he has gone into relapse.  He feels great though and has since the chemo took effect.  He was stage 4 and very sick.  90 % of his bone marrow was packed with MCL, which could be another reason it came back so quick.  We caught the latest very early, only in a few nodes and his oncologist is referring him to Stanford University (CA).  We are waiting to hear when his appt. will be.  Thinking we will hear this week.  We are very optimistic and also the fact that there is a new drug just released from clinical trials for relapsed MCL.  It is still under trials for other lymphomas but released early for MCL only, because of the much needed success rate.  If you want to research it, you can google "Ibrutinib Dr Wang" I hope this info is not too scary for you, we know what MCL is, but we also know that doctors and researchers are fighting hard in the battle and having success.  Bill and I wish you the very best and know you will do well with your treatment.  If you want to see the latest posts about Bill's relapse, you can go to the title Unexpected and Not so bad.  It will give you a good idea how supportive the gang is here.  Please feel free to post anytime, we cry, whine, and laugh here but most of all we care.  We would be very interested to know how you are doing with your future treatments. You can also write personally to us via our page, 

Thinking of you, Becky 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1050
Joined: May 2012

You are aware, Becky, that you are rapildly becoming the MCL expert here.... Did you ever think of re-contacting the German doctors ?

Still praying, obviously, for you two.

Angelina -- welcome !  MCL is quite rare, and Becky is a great resource for the protocols that exist. I hope the drugs work well for you.

 

max

illead's picture
illead
Posts: 505
Joined: Aug 2012

I feel like Mighty Mouse "Here I come.....to save the day!" Laughing I'm just kidding of course.  I'm so happy to be able to help in any way.  There seems to be quite a few lately and we sure hope for the best.  We are still waiting to hear about Stanford. Bill called the cancer center and the nurse said she would leave a note for the girl who makes all those arrangements, so hopefully we will hear something tomorrow.  I just keep thinking, the longer we wait the more it grows, but I know it's mostly paranoia.  Bill has not emailed the German doctors but he is going to real soon.  In fact your question was a reminder, thank you.

Thank you for everything, Becky

Babsal1958
Posts: 5
Joined: Feb 2014

Hi Max,

Thank you for the welcome and well wishes! Best wishes to you as well.

Angelia

 

Babsal1958
Posts: 5
Joined: Feb 2014

Hi Becky,

Thank you so much for the warm welcome and for sharing your husband's experience. I'm so sorry to hear that he has relapsed. Both of you will be in my prayers. I will be watching for updates on his new treatment and progress.

I was very fortunate that my cancer was found early. I noticed 2 swollen lymph nodes on the left side of my neck and had them checked due to so many complications from Lupus over the years. A surgeon removed one for a biopsy and that's when I found out that I have MCL. The Bone Marrow Biopsy was negative. The PET Scan showed 2 more areas of Hypermetabolic activity. One area behind my intestines and the other near the Illiac. The SUV's were 6.0 and 6.8. It also showed a couple of other areas with Physologic activity with FDG uptake.

Fortunately, there are no organs or bone marrow involved at this time.

I'm glad I found this site. It looks like a very nice group of people helping each other.

Thanks again and I look forward to getting to know you and Bill better.

Angelia

 

rich23
Posts: 1
Joined: Mar 2014

Hi,

Im richard currently leaving and working here in abu dhabi, I jsut wanna ask and hope enlighten me with regards to my brother. He diagnosed for having stage 2 lympoma last Sept 2013. He was undergo six cycle of chemo and he finished all of the cycle. But we surprised when we recived the result of his last CT scan saying that his lympoma is now in stage 4. please help us to explain waht happen to his treatment for abouit six cucle .

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1050
Joined: May 2012

Welcome, Rich.

Sorry about the development with your brother. You do not give a lot of clnical information about him. Please state what TYPE of lymphoma he has (stated on his biopsy report) and what drugs he was receiving (there are dozens of differnt chemos in use for differing types of lymphoma).

With this information, someone here should very likely be able to address your questions.

max

Rocquie's picture
Rocquie
Posts: 487
Joined: Mar 2013

Hello Angelia and welcome to the group. I have a different lymphoma but my treatment regimen is identical to yours. I had 8 cycles of R-CHOP and so far I've had 6 maintenance Rituxan infusions. 

I am sorry to hear about the other health concerns you have and I don't how those conditions with react with the chemo. I'm sure your oncologist has discussed those things with you? 

Many people here say that the more times they had chemo, the harder it got, especially with fatigue. That was not the case with me. I actually found it easier to deal with as I went along. I had learned what side-effects to expect and when, so I had also learned how to cope with them (drugs!) before they got bad. I also planned activities around the days I knew I wouldn't feel up to par. 

Also, most people here hated and I mean absolutely hated the prednisone. I didn't mind it at all and in fact in some ways I liked it very much. It did make me feel "edgy", but an Ativan quickly relieved that. Otherwise, I liked the extra energy and the increase in appetite. I felt pretty good the 5 days I took it and started crashing on day 6 on through my nadir. 

I had trouble with blood counts throughout treatment. I had Neulasta shots after each R-CHOP. I had several blood transfusions. (Thank you anonymous blood donor!)  I also had problems with infections and had to take many, many antibiotics.

I am sharing my R-CHOP experience because you asked. But as I said before, we have different types of lymphoma and different health histories so your experience may be completely different.  

I am sending healing wishes your way and I hope to follow your lymphoma journey.

Blessings,

Rocquie

 

Babsal1958
Posts: 5
Joined: Feb 2014

Hello Rocquie,

Thank you for sharing your experience with R-CHOP. I'm glad to hear that you did well with the treatments. Sorry to hear that you had so many blood transfusions and had blood clots as well. May I ask how you knew you had blood clots? The symptoms?

I must admit, I'm one of those people that hate the prednisone. I have taken it for so many years for Lupus and my weight has been like a roller coaster. I normally take a low dose of 5mgs daily except when I'm in a Lupus flair and I do high tapers down. This 100mgs for 5 days is a little rough. On day 6 is when my stomach started really cramping with diarrhea. Today is day 9 and it is feeling a little better.

I'm keeping a daily journal of how I feel so I can refer back as the treatments progress. I can already tell a big difference in the size of the one remaining lymph node on my neck. It has shrunk a great deal.

I did ask the Oncologist about my other health issues with the chemo and he said that it wouldn't effect them. I was kind of hoping it would improve them...:)

How often did you have PET Scans to monitor progress? How are you doing now?

Thank you for the warm welcome! I look forward to getting to know you better and hearing about your progress. You will be in my prayers.

Thanks again,

Angelia

 

Rocquie's picture
Rocquie
Posts: 487
Joined: Mar 2013

The first blood transfusion I had kind of freaked me out only because of my preconceived ideas. I thought of transfusions as something in medical dramas in the case of a horrible car accident or being shot. Surprised Thats how little I knew! After that, I didn't mind them at all because I felt so much better afterwards. 

I never had any blood clots. ??

I had a total of 3 PET scans. The last one showed no evidence of disease. I have been in remission since 2-25-2013.

Hugs,

Rocquie

 

 

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Welcome Angelia,

  I have a different type of Lymphoma than yours and also did a different kind of chemo. Mine is Follicular NHL-stage 3-type A-grade 2. It's a slow growing indolent type and non-cureable. My chemo was CVP-R, followed with a 2 year every other month infusion of Rituxan. I am currently in remission. We have many members that did R-CHOP, so I will let them tell you their experience with it. Please share back and know we are here for you. I'm glad you are feeling good after your first dose, and hope all continues to go well as your chemo treatments go forward. Best wishes and prayers for you.

Take care...Sue, age 63. Smile

Babsal1958
Posts: 5
Joined: Feb 2014

Hi Sue,

It's so good to hear that you are in remission! I will be praying you stay in remission for many years to come.

Thank you for the welcome and I look forward to getting to know you better.

Best wishes to you,

Angelia

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1050
Joined: May 2012

Sue,

Perhaps we could start a club here known as "The Indolent Club," or "The Slow-Movers?"

maxCool

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Max,

  I found it interesting when my PCP told me my cancer was indolent/slow growing, but in the next breath said the problem with that is, it's noncurable. He said the aggressive,type A cancers are easier to treat and more cureable.As long as it stays slow growing and doesn't travel to any major organs,I will be grateful. Slow works just great for me! Sue

jimwins's picture
jimwins
Posts: 2004
Joined: Aug 2011

Sorry for the late response.  I had diffuse large B cell lymphoma and was treated with R-EPOCH which is very similar to your treatment regimen.  You will lose you hair and it's easier to buzz it off yourself and have that control over it than deal with it coming out in clumps, etc. :).  It will grow back as you said - mine came back darker and with less gray - imagine that.  I wore fun hats, dew rags, and knitted caps to keep my head warm - no wigs for me!  I was hospitalized during my treatments.

Some things do get better as you go through treatment as you will know what to expect, have a little less anxiety, and can tweak things around the treatment cycles.  Things I did around the cycles were:

1. Started sennokot a day before treatment as I had problems with constipation during treatment.

2. Avoided acidic foods/dressings during and for a few days after treatments to avoid mouth irritation.

3. I took walks everyday in the hospital dragging that IV pole with me to help with circulation and avoid those blood clot prevention shots :).

Generally the fatigue got wose for me.  I pretty much crashed after the prednisone wore off and by the time I was feeling a little better, it was time for the next round.  I was very fortunate that I didn't have to deal with many side effects.  I had nausea and vomitting once (pretty sure it was because of constipation).  After treatment, your blood counts will go down (neotropenia) and you may be susceptible to infection - avoid crowds, raw foods and sick people during this time and use hand sanitizer often.  Many say that claritin helps with the bone aches from neulasta/neuprogen.  This is no picnic but it is doable and you are not alone here.  Feel free to come here and vent, ask questions and when you feel like it, offer support also.  Nothing wrong with laughing and humor is a good thing.  I always say humor and attitude are free weapons in this war.  

Sending you big hugs,

Jim

MsD831's picture
MsD831
Posts: 18
Joined: Apr 2014

Good day, 

Well I hope this message finds you on a good day. My mother also has a history of lupus amongst other issues. She was only able to do five rounds on RCHOP it greatly reduced the lymphoma in her lungs, but she was constantly running to the restroom either vomiting or diarrhea. I ended up taking her to the ER after two days and she was diagnosed w colitis. Initially her RCHOP was followed by Neupogen injections, but she couldn't bare the skeletal pain effect and was switched to Nulasta. 

Her last IV chemo was in 2012 and in 2013 they put her on Cellcept to manage the lymphoma, lupus and myasthenia gravis. Diahrrea is still an issue. 

Last summer my mother phoned me at work very non chalant saying her arm didn't feel right. Stubborn woman would not call 911 because she wanted me to help her get ready. Oy vey! I rushed home her arm was slightly swollen, looked pale and felt cooler than normal  and clammy. The past few days she wasn't eating well. She'd take a few bites and say she felt stuffed. 

The ER Dr. ran a myriad of tests and determined there were three clots in her upper arm which he sees often in patients that have a cataport in for 2yrs or greater. The next day they blasted the clots and put her on Xarelto. The fullness feeling/lack of appetite was explained as the blood trying to circulate causing pressure in other areas of the body. 

Hope this is useful

Dez

 

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