I’ve just returned home from my final round of R-CVP treatments, diploma in hand and a nice card from all of the nurses and doctors. Every day, several people find my blog, searching for personal experiences with Rituxan and CVP chemotherapy, so I offer this post for them, as a summary of my experience.
I was diagnosed with indolent B-cell NHL, stage 2/grade 1 in November 2007, possibly an oddball MALT lymphoma. I had a 4 cm x 5 cm tumor in my stomach that had grown through the stomach wall. The bone marrow biopsy was clear and, aside from two localized nodes that might be involved, my cancer has not spread. My cancer cells are uniformly CD20+, a perfect target for Rituxan.
My first round of treatments came in December 2007 with 4 weekly infusions with Rituxan. These treatments were uneventful, the only side effects coming from the pre-meds that made me drowsy. I did, however, have a bad reaction following the third treatment. I woke the next day with aching in all of my joints and some redness and swelling. I couldn’t hold a cup of coffee and could barely step down into our sunken family room. I spent the next week in bed and, when I returned for my final rituxan treatment, we added Solumderol to my pre-meds. I was fine after that.
The CT scan following the Rituxan-only treatments showed only minimal shrinkage of my tumor. My oncologist wanted to repeat with another round of Rituxan in 3 months. She said that she’d had an elderly patient with similar results after round 1 but after a second round of Rituxan, her tumor was gone. At this point I sought a second opinion and decided to go with the more aggressive R-CVP treatment that the second doctor suggested.
On March 10, 2008, I began a series of 6 R-CVP treatments occuring every three weeks. The treatments themselves have not been painful…..I actually look forward to them! A chance to read and relax…..and talk with my chemo nurse who is very nice and shares similar interests. Here is a summary of the side effects that I experienced:
Hair Loss: I have not completely lost my hair. It has gradually thinned over the course of my treatments, beginning around the time of my second treatment. My hair is thinner in front than in the back and, if you didn’t know me, you wouldn’t know that I was going through chemo. I didn’t lose my eyebrows or eyelashes, although my eyelashes may have thinned a bit. The good news! I don’t have to shave my legs every day.
Nausea: Thanks to some great anti-nausea drugs, I’ve experienced very little nausea. Zofran, Compazine and Ativan work great and, when I just need a little something, I take 500 mg – 1000 mg of ginger.
Metallic Taste: I experienced this most strongly during the first cycle. It’s like sucking on a cheap spoon and thinking about something really good to eat. The salivary glands along the sides of your tongue get over-stimulated. In subsequent cycles, the taste was there but not as strong……it just made my coffee taste funny.
Constipation: I was most aware of things slowing down around days 7, 8, 9. Drink lots of fluid, eat lots of fiber, take magnesium. If necessary, get a prescription for Reglan. See my Rollercoasters post!
Menstrual Cycle: I will be 46 next month so I am at an age where perimenopause is a possibility. My periods continued normally through my 4th cycle and then stopped. This may be temporary, it may be permanent……..time will tell. Update (12/25/08): 7 months after my last period, my periods returned Christmas Day 2008.
Neuropathy: I have experienced peripheral neuropathy in my fingertips and in the tips of my toes…..some cycles more than others. It hasn’t been a big deal……except when I’m trying to strip my wire-haired dachshund!
Fatigue: Fatigue has been the biggest side effect for me, gradually increasing as the treatments go on. When I’m tired, I make myself rest and I try not to push myself too much.
Chemo Brain: For years, I was supermom……multi-tasking and making sure that everyone and everything was where it needed to be….before it needed to be there. Now…I’m not as able to multi-task, or sometimes even to focus on the work in front of me. I experience “cognitive dyslexia”……my term for “what’s goin’ on in my head is not what is comin’ out of my mouth!” This will improve……I hope!
My last CT scan showed minimal shrinkage of my tumor again so I will have a PET scan in mid-August and surgery to remove my tumor in October. I’m looking forward to getting it out of there!





Carrie,
Big congrats from me and K on finishing up your chemo. Sorry it didn’t have a greater effect on your tumor, but I feel really strongly that the surgery will be successful. In any case our prayers are with you. K’s spending most of his day napping, and he highly recommends it
Take care,
Jackie
Congratulations! No more chemo Yay! On the cheom brain. Uh I used to be able to do many things at once but now my brain can’t handle it. Hope it goes away!
I am getting ready to begin R-CVP and reading blogs is such helpful information. Thanks! Nadine
My mom has NHL not exactly sure what grade, but this is year 2 with cancer. we have already done the R-CHOP and are now trying the RCVP. starting next wk. Mom’s cancer has spread to her breast, and a few spots on her lungs. she has lymph nodes that are enlarged through out her body. She was admitted to the Hospital last wk with bronchitis, then it turned into pneumonia. She has been released, still has the cough. Hoping that this treatment will work and give mom a break for a while.
Kathy
Your blog made me smile! I am experiencing, to some degree, all of the side effects you mention, but the “chemo brain” comment made me laugh outloud. I have learned to be very kind to myself and to count every day with good friends, great co-workers, and loving family as a blessing. Thanks for your insights.
I came across your blog when researching the treatment i will start on sept 5. It was helpful to see a list of side effects which were not too daunting. Mostly i was pleased to read that you kept most of your hair! I wish you well.
Was diagnosed with Cll 5 years ago. Had PCR for a couple of tumors 30 months ago, and they have not returned. Recently began a 6-cycle CVP+R for some bulky lymph nodes. The only downside so far was major fatigue during the second week
Started the rcvp today. Having trouble sleeping so roaming the web. Found your comments most helpful. I have been through R-Hypercvad, allograft bone marrow transplant, RICE (only 1 course) and lenalidomide for a year. I would like to go on bellinostat (a histone deacytelase inhibitor) but need to raise my counts before I qualify. The hope is that if I can be my lymphoma (B cell NHL- mantle cell) than my counts will improve. Of course since the RCVP causes some myelosuppression this sounds counter-intuitive to me- but I need to do something at this point.
Glad to find your blog- gave me the information I was looking for. Hope you do well with your next treatment. Wondering why you were not offered gastric resection- even with the two local lymph nodes. There are older articles that suggest IIE gastric lymphomas can do well with resection. However, I am no oncologist so I apologize if this is out of line.
Thank you for your insite i am to begin treatment within the next month.
I will keep you in my thoughts & prayers
Carole
Carrie,
I found your blog while looking for information on NHL and menstral cycle. I was diagnosed w/ NHL – B-Cell type in stage 4 on 4/29/08 at the age of 40. I completed 6 full cycles of chemo and two rounds of Rituxan last November. I agree w/ what’s on your web with chemo brain, etc….you have to find the perks throughout this journey – no haircuts, color, no shaving for months, no bad hair days, and no cycle. This is how I found your site as I now wonder will it ever come back – it’s been a year for me and sometimes I think I’m crazy b/c I don’t really want it back.
For those getting ready for this journey, rely on your family, friends, co-workers and your faith – it will get you through. Follow your heart and mind. I couldn’t read anything about this disease and relied heavily on my team of nurses and my oncologist and followed their direction to the letter. This is not the norm for me as I usually read anything I can get my hands on and probably would have if it hadn’t been me. Hence not a lot of acronyms in my reply and my job is a supervisor for special education – we have as many acronyms as the miliatary…You have to decide what works for you and don’t focus on all the stories people will want to share. One of the things I learned is that everyone’s treatment varies based on your diagnosis – keep that in your mind.
I found out Wednesday that I am in remission with completely clear PETscan results. Next month my port should come out of my chest – that’s the visual reminder for my 7 year old that this happened to his mom. I can’t wait! God is good!!!
I am glad you made a blog. I am actually doing research for my sister, she will start the cvp-r soon. She is 48, lives a long way away from me, from MO to Ga., she is a deaf mute and I am trying to find simplified information for her.
Excellent site, keep up the good work
has anyone tried any alternative therapies? cesium high ph/ protecel /hoxey etc
To all you fellow Non Hodgkins Lymphoma people out there. Check out this link for some very informative and non affiliative information. There are over 1000 members of this group and it is so good to be able to liaise with other people with exactly the same issues you may have.
http://lymphomasurvival.com/
Best in Health.
Daryl