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R Chop help

Klk1962
Posts: 2
Joined: Apr 2020

Hello, I’m new to this page as it’s hard for me to reach out.

To give some background I was diagnosed in 2006 with follicular non Hodgkin’s lymphoma. I was doing watch and wait until 2018 when a cluster of lymph nodes under my right arm pit got bigger and bigger and I had a lymphoma mass in my left eye socket.  I had radiation on my eye socket and went through 6 months of Rituxan and Bendeka. I was in remission until January 2020 when a small spot was found in my abdomen. The small spot is now a 2 inch in diameter spot in my abdomen that located up against my aortic artery. A ct guided biopsy was done and it is my non Hodgkin’s lymphoma. Today my oncologist discussed R chop treatment followed by a stem cell transplant at Mayo Clinic. I started reading about r chop and stem cell transplants on the internet. I feel like I’ve suddenly been given a death sentence. Can someone give me information on the effects these two treatments have on your body. And are they effectiv. I cannot quit crying tonight. Thanks. 

PBL
Posts: 222
Joined: Jul 2016

Hi,

There is really no particular reason to feel so scared. R-CHOP is standard first- or second-line treatment for NHL, and has been for many years. It is extremely efficient against lymphoma, and you will find plenty of patients to testify on that.

I myself have follicular NHL (diagnosed in 2016) and was treated with R-CHOP followed by two years of Rituximab immunotherapy. I have been in remission since then, and, as my hematologist says, the PRIMA study results give me a 50% chance of still being in remission in 2026.

True, CHOP is harsher than Bendamustine. In particular, you will certainly lose your hair this time - but then, hair does grow back after treatment is over. Other than that unmistakeable, visible sign of your illness and treatment, you are likely to experience some of the unpleasant side effects such as severe constipation (but you can take precautions against that...), nausea (ditto), neuropathy (keep a diary of your symptoms and inform your medical team as necessary, as some treatment adjustments may be warranted). But this is all worthwhile if it can give you a long remission! 

The autologous SCT will serve to consolidate the remission obtained by the chemo - so, again, it is worth doing, since you have already been treated and had a short remission as a result of that initial treatment.

Keep in mind that you've already had twelve years without any need for treatment since diagnosis, and that the proposed treatment plan may well afford you just as many (or more) disease-free years.

The one thing you will have to be especially cautious about - especially once treatment has begun - is catching any one of the bugs currently going around (think coronavirus...). So, if you have not been strictly applying social distancing and hand washing recommendations up to now, it's time to really take those seriously.

I hope this helps. If you do have any specific questions, do not hesitate to ask. I have no doubt that many here will soon chime in.

PBL

Klk1962
Posts: 2
Joined: Apr 2020

Thank you for responding. After I read your note I felt better. I don’t know why but I’m feeling much more nervous this time around than did when I had treatment in 2018. My first chemo treatment is 4/23/2020. I have been taking the covid 19 seriously and in Minnesota we have a stay st home order until 5/3/2019. I’m currently working from home and only going out for groceries and wearing a homemade mask when I go out to the Grocery store. I’m looking for a good counselor or therapist that I can go to as soon as they start taking patients but that may be several months. This has helped me to write on here as none of my friends understand or do not know what to say to me. Any other coping mechanisms you can suggest? Thanks again. Kathy

PBL
Posts: 222
Joined: Jul 2016

Hi Kathy,

It is normal - I guess - to feel somewhat nervous any time something new arises in our situation. I am sure you know what I mean if you have had to go through the periodic blood draws and imaging...

But does it fundamentally help in any way? My guess (here again) is that it doesn't. So, seeking help with an aim to keep the anxiety in check is the reasonable thing to do. These days, with this pandemic, it is hard to say what solutions are out there on offer for people having to deal not only with the global crisis, but with their own personal illness on top of it. There may be some online or phone-line psychological support on offer where you are. Or, you may want to ask the nurse where you are being treated when you go in next week for your first infusion (I will be thinking of you on that day, by the way). They may have a specific psychologist or psychiatrist whom they can ask to assist you without having to go through the long search and even longer wait.

In the meantime, posting here can help you through that no-man's-land. Some other solutions you may want to look into - as they present the advantage of being immediately available - are yoga and meditation. My first experience with that was when I was in treatment. There was a nurse at the hospital who headed a fortnightly session for cancer patients, and she was, I must say, really very good. It helped me tremendously, and I later went on to enroll in a yoga class in my town. You do not, however, need to go to a class, as there are excellent free yoga tutors on YouTube. I would really encourage you to try it, if you haven't already.

Regarding the current infection risk, I would say that spending most of your time at home (I only go out shopping once a week) is the essential way to avoid it. Wearing a mask - even a homemade one - when you step outside may be better than nothing in that it signals you to others as potentially ill, and therefore reminds them to keep their distances - but nonspecific masks are essentially useful in not spreading your own germs out there for others to catch, not protecting you from getting what's floating out there... What I find more helpful is wearing gloves, as their mere presence will remind you not to touch your face. Using an alcohol rub on your hands as soon as you get back to your car after doing your shopping, washing your hands properly as soon as you get back home, washing your fruits and vegetables (water and a little soap does the trick) if you eat them raw should keep you safe. Cooking will get rid of the virus, but not refrigerating or freezing. Here again, the nurse at your cancer care facility should be able to give you the most appropriate and up-to-date advice on hygiene and how to stay out of harm's way.

Kind regards,

PBL

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I was diagnosed with follicular lymphoma in Dec 2014. I learned quickly to take a stool softner the night before R-Chop started. I would bring snack type food, a book and a 2 liter bottle of water. Sometimes 2 bottles. Before starting the Rituxan I got a high dosage of tylenol and benedryl. The Prednisone part of the chemo was the one that got me to this discussion board. Taky the 4th day I felt less like a zombie and was back at work. 

Once I was in remission I was on Rituxan for 2 years.  I found the benedryl to give me restless legs so I would walk around until the drop finished and we were ready to start the Rituxan.I looked forward to treatment day in that it was a day I did nothing. Had the treatement. Then went home and slept for a few hours. Went back to work the next day. BTW even though I had teh option to work remote I didn't. Chemo day was ME day.

PBL
Posts: 222
Joined: Jul 2016

Hi Kathy,

Thought of you today. I hope that first infusion went well and you're resting comfortably. Do keep us posted.

PBL

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