My R-CVP Experience

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!

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28 thoughts on “My R-CVP Experience

  1. 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

  2. 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! 😉

  3. 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

  4. 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.

  5. 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.

  6. 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

  7. 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.

  8. Thank you for your insite i am to begin treatment within the next month.

    I will keep you in my thoughts & prayers

    Carole

  9. 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!!!

  10. 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.

  11. 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

  12. Thanks for sharing your experience with us. I will begin treatment soon and it is good to hear first hand from a patient rather than the oncologist what to expect.

  13. Dear Carrie
    Thanks for sharing your experience of R-CVP treatment. I am 55, was diagnosed of NHL in last month and have taken 1st cycle of chemo on 16th December. I had enlarged node of 4 cms x 5 cms in the left inguinal region. Since I can feel it from outside I am finding reduction in its size to almost 50% within 7 days of 1st cycle. I have not experienced other side effects except fatigue, slight feverishness, and headache (not to a large scale). I am also trying music as therapy for about an hour (just listen to music, each beat distinctly, enjoy and relax), also relaxing technique of shavasana in yoga (lying down and relaxing every part of the body) also helps. In addition, I am also trying Silva Mind Control method, in which, I lie down, count 100 to 1 (reverse counting) instruct my body and mind to relax and then visualize that the drugs are acting on each of the cell, killing malignant cells fast and the body is generating new healthy cells, visualize that the body is cooperating with chemo therapy and not reacting.
    Thanks also to my wife who ensures that I take 300 Ml of wheat grass juice in the morning, tender coconut water, one pomegranate and orange juice. Since the immune system needs to be strengthened during chemo therapy, extra intake of natural nutrients may be useful.
    Niranjan Gupte
    Mumbai, India

  14. Just read your blog and found it very interesting. Just went through the same thing that you did except some of the treatment. Everything you said, I had the same side effects…..Was diagnosed with Malt lymphoma in Jan. with a tumor the size of 5 x 5.5……did 2 rounds of R-CVP every 3 weeks. It was considered a clinical trial. The tumor only shrunk 1 cm in width and height. I then was followed by 3 weeks of radiation to the full stomach and double dose to the area where the tumor was located. I was told that this was the actual treatment that would help. 2 months later went in for a Endoscopy to see how the tumor was doing and to my surprise it was gone and only a small ulcer left. They placed me on Pantaloc and I have then since gone back to do another Endoscope 2 months after the last to find that the ulcer is healing. Just thought to tell you that maybe you could ask about the Radiation before surgery. I’m now in remission.I am now doing maintenace chemo for 2 year every 3 months but all I getting now is Rituxamib. The reason why I was reading your article is that i’ve been experiencing mild head discomfort. I wouldn’t call them headaches but I was wondering if it had anything to do with the Rituxamib…….I had a very sharp pain two weeks after my first maintenance Chemo that was sharp but quick. Ever since then I feel a mild throb in the same spot. Don’t know if I causing them myself with the fear or they are really happening…….after being diagnosed with cancer, everything scares me and my anxiety level is so high….
    One word of advise….
    Have faith! God does listen to prayers.

    Fil

  15. Carrie,

    My daughter found your blog for me & it fits exactly what is happening to me right now. I am a retired 64 year old female elementary teacher. I was recently diagnosed with NHL this past March, 2011. It was discovered quite by accident on New Year’s Eve when I went into the ER. They did a routine CT scan & found some enlarged lymph nodes. I actually had some kind of virus at that time that brought me to the ER. I know now that God took me there that night or I still would not know because I really did not have any particular symptoms.
    After that my journey began with all the scans & biopsies. When it was confirmed I was in shock so to speak. I have a wonderful Oncologist that is treating me. At first we did the watch & wait & then my last PET/CT scan showed some of the nodes were beginning to enlarged. So, I had my first chemo treatment last Thursday. It frightened me at first, but the nurses were wonderful & made it comfortable for me to tolerate. I have family & friend support which helps a lot too. I am now 4 days after my first treatment & after I read your part about “Brain Chemo”, it was exactly the way I have been feeling.
    I too hope this will pass. God Bless to all of you to through this journey in your life. We can beat this!

    Billie Kaye:)

    • God bless you, too!!! Keep a positive attitude and you can beat this! I will be thinking of you and praying for you! I hope that you will stay in touch! Carrie

  16. Thank you so much for sharing your story. My husband has Waldenstrom’s non Hodgkins and his treatment is RCV without the P as he can’t tolerate the Prenisolone.We can relate to chemo brain.Hope this improves. He is having his last treatment today.It will then be 3, kryptonite mapthera

  17. Carrie,, thanks for doing this. It is just nice to read about others with similar experiences. I am in the midst of my 5th round of R-CVP and your experiences almost exactly mirror mine. The only side effect I would add is that my nose runs continually. Thanks again. Vic

    • I hope that you’re doing well, Vic, and I’m glad that you’ve found my blog helpful. It really helped me to be able to read about others’ experiences when I was going through my treatment, too. I appreciated the more personal accounts from the patients who shared their experience which, in some ways, was more helpful than the information that I received from the doctors. Thank you for taking the time to write. I wish you the very best!!! Carrie

  18. My husband has just had his last treatment but will have 3 monthly mapthera. He has Waldenstrom’s low grade lymphoma. Would be interested in anyone who has the same.

  19. Hi everyone…
    all this happened last week.

    tests reveal i have autoimmune hemolytic anemia
    caused by low grade lymphoproliferative disorder

    been on prednisol (steroid) for 1 week
    starting dcvp in 2 weeks

    it is considered a ‘hard’ chemo?
    are there ‘milder’ options available?
    is is best to hit it hard to get rid of it ?

    ps. I am 48 yr male. who considered himself pretty healthy !!
    any comments will help
    thanks in advance
    b

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