Escalation of lymphoma

Hi Mikey

I have large diffuse B cell Lymphoma which is aggressive, I’m a male aged 59. I wasn’t put on a watch and wait for mine and when treatment started I had 3 cycles of R-chop and 15 fractions of radiotherapy for which I had the last one today.

I was petrified about having the chemo and unfortunately a lot of that was down to reading what now, looking back were some worse case scenarios. I Know now that it was the unknown that scared me more than the treatment itself. I followed what my team told me to do and made sure I ate healthy, nutritious food along with some treats to keep my weight stable. No alcohol and I drank plenty of water, squash, tea.

I also went out for gentle exercise or walks, just to clear my head, which I found very helpful. Once I’d get through the First week to ten days, I found my taste started to come back and My mouth was not so dry. Side effects vary from person to person and you will not know until you start, what you may or may not get. I made sure that I took my anti-sickness pills which worked brilliantly. If you find yours do not work then you must speak to your team, who can put you on another type.

with R-chop I did lose my hair and so I decided to shave it quite early on. It’s already growing back only weeks after chemo finished. 

If you like reading then take a book with you and with the weather changing, maybe a small blanket to keep you warm if cold. Throughout your treatment, keep your team informed of anything you are concerned about. They will take great care of you. 

Many people do well with R-chop and I’m sure someone will tell you about R-cvp. We are all different and will all react differently, but hopefully your journey will be a kind one. 

all the very best.

stefan

Hi  and welcome to the Community but sorry to see you finding us.

The fact that you have said that you have NHL you would be better posting in the actual NHL groups as HL and NHL are rather different with different types of treatment.

We have a number of NHL groups so if you know the exact type of NHL do join the group or stick to the general NHL group I see you have already joined.

General Non Hodgkin's Lymphoma

Follicular Lymphoma

Diffuse Large B-Cell Lymphoma

Mantel Cell Lymphoma

T-Cell Lymphoma

The treatments you have mentioned are used a lot and you will be able to connect with others who have walked the treatment path in the other groups

I was diagnosed way back in 1999 with a rare T-Cell NHL and I am still around doing great so be encouraged.

I will keep an eye open for you.

Hi Mike

this new website is very challenging. The reply I sent to Mikey had disappeared completely and I’ve spent the last 20 minutes writing another one. When I finished it I went to send it and I was asked to log in again. I pressed log in and instead it sent my original post, which appeared from no where again. I have no idea what’s happened to second post now but it’s getting very frustrating to come on here and try to navigate properly!

Hi Mike

Thanks for your reply. I must add confusion to my symptoms as my condition is definitely Nodular lymphocyte predominant Hodgkin Lymphoma! Apologies.

Hi Stef61 I see your post it in my feed, well done and yes there are still a few glitches that are being worked through at the moment so let’s look for more progress to be made.

Mind you I have had my car for over a year now and still can’t work out how to change the clock 

Thanks so much Stefan, good advice I'm sure. Mike

Hi Mikey, ok that great so you are in the correct place

You can put NLPHL....... or Nodular lymphocyte predominant Hodgkin Lymphoma into the search tool and see some of the posts from other folks with the same type.

R-Chop or R-CVP are not the normal treatment for Classic HL but often for NHLs but as you say your biopsy will decide the best route and from what ai have seen R-CVP is less a challenge compared to R-CHOP.

have a look round and post again if you alga e any questions.