Just started first round of Chops

Hi Cattins and welcome to our little corner of the site.

What is the name of the Chemo you are getting?

In way of some encouragement. I was diagnosed in 1999 with a rather rare and difficult to treat Stage 4a Low Grade Cutaneous T-Cell (skin) Non Hodgkin’s Lymphoma. I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”...... After 14 years, 900+ Dermatology treatments/clinics my condition became very aggressive so between Sep 2013 and Oct 2015 I had 6 cycles of R-EPOCH (750hrs), 45 radiotherapy zaps and two Allo (donor) Stem Cell Transplants (June 2014 and October 2015) and was eventually told I was in remission in September 2016 for the first time in 17 years...... and living the dream.

Ask you questions as no question will be silly ((hugs))

EDIT - just seen you are having CHOP..... a very effective treatment with great results.

Hi again- These are some useful links for you to have a look at:

Nausea, remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.

Fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue. During my 6 cycles of R-EPOCH I was on my chemo for 120 hrs 24/7 at a time and the main issue I had was fatigue but my nurse team told me to keep active so I walked the ward corridors with my chemo stand after every meal and actually did a few miles a day.

Avoiding Infections obviously is very important but you will totally get this during these challenging times.

I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects your kidneys.

Hi Mike,  Good to hear from you, I cannot believe you came out the other side, you must be made of really tough stuff.

It must have been a real challenge just coping with others being totally in charge of your treatment, I feel that my body isn't my own any more and I've only been on this journey 3 months so far.

Feel if I drink another drop of water I shall start growing fins, but taking your advice as kidneys are so important I know.

I have done lots of exercise today and am feeling tired now which is great, as haven't got to grips with the high that the

steroids give me,  at 3.00am I feel as though I could run a marathon, no good for my sleep pattern at all.... never mind

only two days left before I leave them off this session, hopefully a good night's sleep will follow.

Thanks for the contact, will chat again soon I hope - good luck with everything.

So sorry to hear of this! T-Cell Lymphomas are a tiny corner of the lymphoma world, which itself is a corner of the cancer world. Yet, Thehighlander is most certainly a success story. There have been many advancements in treatment and yes, you now must bear your "immune system in bottles." Our marrow is suppressed during treatment and so, since it is the source of our immune systems, it must be supplemented via a veritable plethora of preventative medications. So, chin up and you will make your way through this. 

Thanks guys, you sound very positive especially since you've been through so many treatments.... a lesson there I think.  I am now in my rest from the "pill regime" and finding life almost normal again.  If you can remember back as far as your first treatments, did you get more tired the more chemo sessions you had?  I would like to get back to doing some swimming (if we're ever allowed to that is) and hoping I will still have enough energy in a couple of months time.  Don't know whether to rejoin my local gym/pool when they re-open, or do you think that might be pushing my expectations too far.

Hi again, I would think that we all have clear memories of our treatment journey.

You need to expect the fatigue to build as you go through the treatments but keeping some activity going will help this.

You do need to check for your teams opinion with regards to swimming. At various times during your treatment you will be at a much higher risk from infections so controlling the environments you are in is very important.

A small airborne/waterborne infection to a healthy immune system is not normally a problem but someone with a reduced immune system may react rather differently often ending up in a hospital stay.

Everyone will find their own activity levels but it is important to keep safe, my team said “Mike, please don’t do something stupid that means you end up in A&E and we have to stop your treatment.

All the best.

Hi Cattins, I have just finished 6 cycles of O-CHOP and waiting to start maintenance. I have a different type of lymphoma to you, but I specifically asked my consultant about getting back to swimming at my end of treatment, face to face appointment. She unequivocally said no. It's a moist environment, not well ventilated she said; being immunosuppressed I'd be prone to chest and nasal/sinus infections, airborne viruses including Covid, also changing rooms can be a soup of viruses!

Apparently sea swimming would be okay, but I don't live near the coast so that's out, at least on a regular basis!

Hope this helps.

Side effects are definitely cumulative in nature. Many, even most of them will resolve once treatment is over. It would be good to discuss increasing physical activity with your consultant. If your lungs are clear and have not been a problem, then swimming may be in store for you. 

Hi Joy57, 

Thanks for your message, well done for finishing your 6 cycles of CHOPs, hope your maintenance goes well too...  Can you let me know how you felt during the 18 weeks - I have no idea what to expect after treatments (ie do you feel awful, and in what way)  My hair started to fall out yesterday which came as a bit of a shock, I thought it would take a couple of months for that to happen, my hair appointment tomorrow will be a short back and sides rather than what I'd hoped for.  I don't know what I was thinking of when I said I'd like to go swimming, if I'd have given it thought I'd have realised that a pool would be one of the worst germ infested places ever, so have knocked it off my "to do" list.  Thanks again

Hi Cattins,

My hair came out between my 1st and 2nd cycles, same as yours. I was expecting it so it wasn't a big deal, just confirmed to me that the chemo was working! My hair is coming through short now (and a different colour, darker) and I fully expect it to become curly as it grows. See if you can get onto a Look Good Feel Better hair loss Zoom event, it really helped me. Their make-up events are great, too.

As for the chemo, it was fine, I didn't have any bad side effects with or after the infusions. The supporting drugs are really good, but if you are given ondansetron for nausea, watch out as it can cause quite severe constipation! I used Fybogel proactively after one nasty experience!

I had taste disturbance in the last 3 cycles, it got worse each cycle but lasted about 2 weeks each time so was gone before the next infusion. It hasn't come back.

Now, I just feel a bit tired if I've done too much and sometimes still have a lie down in the afternoon. The whole experience was so much better than I'd been dreading. I hope yours is, too.