All about NHL

Hi Colin, welcome to the site but sorry you have had to join us, can you let us know a little more, ie type of lymphoma, is it 6 cycles, just so people can give a more specific response to help. as for chemo the history of the word is it does instils fear, as we all fear the worst from the horror stories. Everyone reacts differently to it so do bear that in mind and not everyone experiences all the side effects, plus if you do have some effects make a note and tell your consultant and nurse and they will help alleviate them. 

first tip is keep a daily diary and always take a note book to consultations as the is lots to take in during that early period, 10 years ago I started 8 cycles of chop in April so have experience of it, its given via a cannula in your hand or arm, make sure they alternate between left and right side as treatment progresses. the CHOP part and pre meds are pushed through the cannula, the R - rituximab is given via a drip and it starts really slow to see if you react to it and they increase the flow every 30 minutes or so. 50% of people do react and the other 50% don't, things to watch for are feeling itchy, hives, the feeling your throat is narrowing, do tell the nurses if any of this happens, its manageable. 

My first treatment took 13 hours as I did react and I had no side effects other than a dry mouth and bit of a metallic taste for a number of days, as treatments progress the effects become accumulative so fatigue and constipation became issues. I had a couple of cycles delayed due to low neutrophil counts and many experience that too. So whilst rchop can be hard its very do-able and if you are sick it can be managed.

Any questions you want to ask just post them up in this thread so you have everything together then do, someone will always reply

John  

Hi Colin

youre in the right place for support and to ask questions. 

I agree with John, keep a diary and take a notebook to all meetings

my husband had 6 cycles of rchop, followed by 15 sessions of radiotherapy - again as John mentioned, his worst symptoms were the fatigue and constipation. 

Easy said but try not to stress too much, it is do-able 

keep in touch on here 

sheilagh 

johnr,

Hi, I am seeing haematologist for treatment plan for NHL tomorrow.. Diagnosed two weeks ago. Had a PET scan to see if radiotherapy had cleared a plasmacytoma in my leg, treated with 25 radiotherapy sessions. That was clear. Have lesions higher in my femur & hot spots in my spine lymph nodes.

The last two weeks have been very up & down. Especially the last few days. Sometimes I just start to cry.

I worry about my two daughters because I will get news tomorrow about some gene I may carry that means I am susceptible to getting cancers. I might have passed this on to them.

Scilly

All the best for tomorrow Scilly, Make sure you get all the treatment plan information and come back to us xx

Hi Scilly, sorry to hear you have yet more to deal with, you have had your fair share of cancer over the years, once you know they type of NHL let us know, I had DLBC 10 years ago. Having had a quick look at your profile its understandable you will have been up and down and with the extra worry about the Braca gene test cannot imagine how you are feeling. I see you are getting good support in some of the other groups so hopefully we can do the same once you know what type it is. Treatment varies depending on the type but most treatments are do-able, many are given on day wards and some of the rarer types require treatment cycles over several days which means short stays in hospital. But lets not get ahead of where you are so do come back after your appointment and give us an update

John  

Thanks Mike x

Hi Colin, another welcome and some great help from the folks.

I had a slightly different treatment so ended up in hospital for 5 days for each of my 6 cycles but R-CHOP tends to be done as an outpatient every three weeks and like the others I did ok with Fatigue developing over the cycles but keeping some activity going helped overcome a good part of this.

Drink lots of water to flush out your kidneys as the chemo will melt the growth areas away so it needs to be flushed from your system.

Watch out for infection risks as your immune system will be affected so watch for folks with bugs and you are on an expectant mums diet.

It would be very helpful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about the journey you and your family are on.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my cancer journey was rather long.

Keep posting and ask your questions as we understand.

Hello Mike. Thank you so much for your reply, it is very late now and have a busy day

tomorrow echocardiogram in morning and busy pm. ready for 1st round of chemo Tuesday am.

I will edit my profile, this is all new to me.

I had a few replies. how do I answer all, as one. rather than all individually?

will be in touch. thanks again. Colin.

Hi Colin,

Went thru R-CHOP last year (with a couple of extra drugs). The first treatments are kind of scary because you don't know what to expect.  In some respects it gets easier after the first few treatments because you've seen what the effects are and are learning ways to deal with them.  (not part of R-CHOP, but I also got spinal injections of chemo) Wrote the following about it earlier this year.

• The immunotherapy pills didn’t cause any noticeable side effects. The Rituximab (the R in R-CHOP) got to be a big drag. Took them a long time to administer it (intravenously), and later cycles started making me feel a bit nauseous while it was going in. The anti-nausea drugs work well, but they didn’t administer them till after the “R”, and before the “CHO”. I couldn’t eat ham sandwiches for a while because that was part of the meal they offered me during chemo.
• Drink water or, if you don’t like water that much, Gatorade, lemonade, iced tea, cool aid etc. I got very tired of drinking fluids, but mixing it up helped a lot.
• Be proactive with the digestive slowing effects of chemo. I wasn’t at first, and deeply regretted it. After the 1^st chemo cycle, I started taking Senna a few days before the chemo, and Miralax on the day before the chemo. If it started working too well, then I would start backing off the Miralax and Senna. The digestive slowing effect seemed to be worse for me on the first few cycles.
• Nausea was only a potential problem for about the first 3 days after chemo. The anti-nausea pills work pretty well when you remember to take them. Pro Tip – take a pill first thing in the morning for the first few days ;)
• Coming off the Prednisone was a real downer the first few times. Didn’t realize it at first, but it really affected my mood/outlook for a day or two after the last pill.
• After my first spinal injection, I had headaches for 4-5 days if I was sitting or standing. Went away immediately if I lied down. For the other 3, I stayed prone or seated for much longer right after the injection, and didn’t have any more headaches.
• Doctor had me get a PICC (Peripherally Inserted Central-venous Catheter) line inserted after the first few treatments. I had it for about 2.5 months. It is a tube inserted in a vein near your bicep that goes up to your heart, with a couple of ports hanging out that can be used to inject the chemo. I didn’t really want it initially, but it turned out not to be nearly as big a deal as I thought, and would recommend it. It sure made the nurses injecting the chemo less nervous.
• Got neuropathy in my fingertips and the balls of my feet. Reduced vincristine dose by half about midway through to reduce the effect. As of about 2.5 months after my last chemo, it’s much better in hands and feet. Also, my hair is growing again.
• The doctors were very good with the big stuff, but not as good with the small stuff. Ask questions, find out what’s going on, and keep them in line if you need to.

 Good luck. You can do it.

Hi Colin, you don't have to reply to everyone all the time, some tips are just post an update and if you want to chat to an individual just use their name or put an @ in front of it and most people understand that's for that individual. We advise everyone to just post all their stuff in a single thread rather than keep putting up new questions though the may be times that works if you don't get a reply in your main thread as you can use the title to draw peoples attention.

hope this helps and good luck for today and tomorrow

John