Hi everyone
I was diagnosed in January this year with advanced disease stage 3/4 NLPHL Hodgkin’s lymphoma and started r-chop chemotherapy at the end of January and have now had my 3rd chemo. I’m now Anxiously waiting for a ct scan next week to see if the treatment is working so far.
It’s been a long time to get here, I’m 38 and was referred two times as a urgent haematology cancer pathway patent over the past 6 years despite having a number of b symptoms and swollen lymph nodes for a number of years nothing was found until this time. I struggle to walk far, get bad pains in my back and leg and get out of breathe when walking or walking up the stairs, I have bad night sweats, I have bad itching all over with dry areas of skin, a few rashes, and am just generally not able to do much nowadays so I’m praying I’m getting better altho it doesn’t feel like it at the moment and feels like I’m going downhill still.
does anybody have any experiences or advice?
Hi 841 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your journey so far.
I am Mike and I help out around our various Lymphoma groups.
I don’t have nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
The phrase “things will get worse before they get better” is often used during Lymphoma treatments….. and it is often the case.
One of the challenges when having chemo like R-CHOP….. (I had the big brother R-EPOCH)…. is how folks slowly getting inactive….. yes the fatigue can build up so we do rest more but it’s amazing how quickly our muscle mass will melt away making most activities much much harder, even seemingly impossible.
I had to be an in-patient for 6 days/5 nights on my 2 IV pumps 24/7 for over 120hrs for each of my 6 cycles of R-EPOCH
I asked my very first nurse for some advice for getting through the Chemo and she told me, eat, even when you feel you can't do it try.
Sleep when you are tired but keep active, small but often spells of activity.
So the first day my nurse would come to me after each meal and took me and Laurel and Hardy (my two Chemo pumps) for a walk round the corridors of the ward…… I carried on doing this and it turned out that I was actually doing about 10000 steps each day.
On the whole the chemo journey was ok and the exercise did help overcome some of the fatigue, sounds so counterintuitive, but exercise does actually help….. but I was not going to be in complete remission so further treatment was required as my NHLs were going to return quickly so I went in to have 2 Allo (donor) Stem Cell Transplants (SCT) (See my story)
The second SCT put me in a wheelchair…. this was due to me ending up in CCU due to heart problems so was in bed for about 3 weeks….. and each week in bed is seen as ageing your body the equivalent of 10 years….. so when I left the SCT unit I was a 60 years old in a 90 year old body.
So the recovery was long and hard……. But I am now 9+ years out from my last treatment, I turn 70 at the end of the year and I am living a great life…… at the moment the mountain look insurmountable… but this can be done…… keep your focus on the greater good in all this.
Always around to chat 
Are you in the UK 841 ?
It's a ballance as to how best to 'live' through treatment.
I continued to work for the first 12 years in a demanding teaching job and yes had various treatments over these first 14 years and did have a number of infections but once my second, more aggressive fast growing High-Grade NHL came along tI had already retired but if I had still been woking aia would have had to stop work.
The bottom line is the less you do the longer your recovery will be and you muscle mass is going to suffer significantly.
There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.
But the effects of the chemo on growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when your immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.
Based on my experience from late 2013 to Mid 2016 we were not hermits….. we went out……. our mental health is important to consider.
Just not crowded places like supermarkets, restaurants etc. We would meet up with family and friends in a quiet corner of a garden centre….. fresh air is a good healer……. We had family (4 granddaughters) and friends visit the house.
The main thing is check that folks visiting are not carrying a bug…. coughing, sneezing etc….especially children. We would open the windows and let some fresh air in, good hygiene control……
We did this all the way through my main 2+ years treatment with 5 months of Chrome, 45 sessions of radiotherapy and 2 Allo (donor) SCTs….. and I did not have one infection.
Why I asked if you are the the UK was to give you some support routes........ 'Talking' with others can help a lot.......
So you may want to also check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.
They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
Aslo check for a local Maggie's Centre in your area as these folks are amazing.
