Hi everyone,
I wanted to share my experience to see if anyone has been though similar.
Last February over the space of a couple of weeks I noticed my stomach began to become distended. I went to the docs and was referred to hospital who xrayd me and said I was constipated so prescribed some laxative and discharged. After a couple more days I was much more distended and uncomfortable so went back tongue docs who immediately sent me to hospital. This time after a CT scan the doctor came to my room where myself and wife were waiting and told be I had cancer. They thought it had begun in the bowel and then spread to my stomach. As you can imagine this came as a complete shock as up to this point I had been a healthy and active 44 year old man.
After being given the news I was moved to the oncology ward where the consultant came to see me and went to great lengths explaining what I had.. Essentially it was like having a carrier bag with lots of sausages in and sprinkled porridge oats in and given it a shake up. In other words it was everywhere and any treatment I would receive would be palliative. On being given that news I was let home for the weekend to come back on the Monday for a biopsy. That weekend was terrible, I'm not sure how we got through it but we did probably the distraction of my 4 year old daughter.
Anyway, I had the biopsy done then spent the next fortnight doing wills and planning as best we could for my wife and daughter.
Then, out of the blue, I had a phone call from the oncology consultant telling me what they thought I had was wrong and one of her colleagues would call me. Literally 2 minutes later my 'new' consultant said right, we known what this is and we can treat you so pack a back and get here now, so that what I did. That evening I met my consultant who explained that I actually had lymphoma and they would start with the treatment the following day.Â
As we were about to start I had a stomach drain fitted and over 2 days 12.5 litres of ascites was drained off then we started. I had B symptoms (sweats, fluid, weight loss) and was classed as stage 4.
I began the RcodoxM and RIvac regimes which pretty much of me in hospital for 4 months. The mid way scan was 'dramatic and astonishing' as the lymphoma had pretty much already cleared however my consultant and I agreed to continue with the last 2 cycles. My scan after the treatment showed me to be in complete remission and that's where I am today.
I am still undergoing checkups every 8 weeks however after the next in June they will goto 12 weeks! There was always some ambiguity about my diagnosis as they couldn't fully agree whether it was pure Burkitt or Burkitt 'like' as I didn't have the myc gene mutation. My consultant did tell me we can either treat your for DLBCL with Rchop as a day patient but recommend a belts and braces with the full RcodoxM and Rivac.
Generally in myself I am well and don't appear to have had any to long lasting side effects of the treatment with the exception of what I think to be IBS. Because the lymphoma was centred around my bowel and stomach I do find it to be far more sensitive and tender than before and quite often have a low level nagging pain which I'm trying to control.
Has anyone else undergone similar treatment and been left with IBS like symptoms?Â
I'm back to walking, cycling and generally living life like 'I nicked it' but would appreciate to hear if anyone else has had a similar experience.
Thanks.
John
Hi and warm welcome to you as well.
The Online Community is a great place to support each other on our cancer journeys, we are not experts, but at the same time are reluctant experts due to the need for information and ways to get to the end of this rollercoaster.
I have to say the family in our lives are the unsung heroes. In reality we just have to get on with treatment but wives, partners and family are holding the worry and can't do much with it.
My journey with my rare type of T-cell Lymphoma has been very long so over the years we, my wife and I have accused support form Macmillan Centres, our local Maggie's Centre and various other support networks. Getting some back up helps lighten the load.
Always around to help out.
Good morning all.
Oxfordbloke, I had R-EPOCH leading up to my first Stem Cell Transplant (SCT) and lost the lot..... EVERY hair on my body ;)
My last chemo was October 2015 getting me ready for my second SCT so again it all went like snow on a warm day....... fast forward to this rather great summer we have had up in the Highlands and basically have had shorts on for 4 moths and my wife and her women friends keep complaining that I have smooth legs as the hair on my legs has not come back ;) so I get my wife friends randomly discussing my legs and coming over to check them out :) :) :) .........and yes, if peeing was an International sport Scotland would have someone high up the table...... there are some funny sides to this journey.
Well I have had some positive news this week, I had a pet scan prior to starting cycle 4 rather than after it ,and I was told that there is no sign of lymphoma any were in my body ,and on Friday i ha
e the last of the chemotherapy injections in my spine, still have 2 more cycles of chemotherapy to do, I wonder what new side effects i can get ,it's evening hiccups at the moment
Well this is a high 5 moment, great news and just what you want to hear.
The hiccups is so weird....... I never have them but my team gave me a Blue pill and it fixed it...... was it a sweet, who knows ;)
All the best for the rest and keep coming back to tell everyone your news as at times some people do need to hear positive stories.
