As 58 year old male I was given the news that my lymphoma is AITL seem like it’s quite rare I start chemotherapy tomorrow the CHOP there going to harvest some stem cells at some point on treatment any pointers on anything that helps get through the chemotherapy.My brothers have all offered donating there own stem cells not sure on that.
Hi again Grick208 and well done navigating to this corner of the group. I am Mike and I help out around our various Lymphoma groups.
As I said in your first post I don’t have Angioimmunoblastic T-Cell NHL (AITL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of T-Cell Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well...... more so as I have had 2 Allo (donour) Stem Cell Transplants with cells from my big brother…… I could not have an Auto (own cells) as I could not be put into remission for the clean cells to be harvested.
CHOP is one of many types of regimes available, it is widely used and very effective......... as for the journey?.... if we line up 10 people on the same treatment for the same NHL we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.
My great Cancer Nurse Specialists (CNS) initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.
I had the big brother of CHOP - R-EPOCH back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........ CHOP is nothing like this.
My story is rather complicated See my story as I had to go onto other treatments but I am coming up to 8 years out from my last treatment and I am turning 68 in Nov and doing great.
Nausea may be a challenge, but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how you are getting on as at times it is trial and error to get the right one. I was only sick 2 times during my 750+ hrs of main chemo and this was down to bad food choices.
Cancer-related 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..... the less you do the longer the recovery will be.
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 our immune system is at its lowest……. then the body recovers in time for your 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.
I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.
I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.
It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.
This link will help you get ready for your treatment as it's a collection of suggestions from people who have been through treatment and are things that helped them during treatment...... Top Tips for the day of your Chemotherapy
Always around to help more, answer questions or just to chat
We all do what we need to do to beat this........ remember that the body and the mind can deal with far more than you would even imagine........ even in the hard times a way forward can be found.
Always around to chat.
Yes, these are most likely G-CSF Injections. I was on them for 4-5 days after my 6 cycles of R-EPOCH and daily for 4 months following my second Stem Cell Transplant.
These injections are designed to ‘wake up’ your bone marrow and get your blood counts back to normal but unfortunately there are side effects like bad bone (my nurse called it bone marrow birthing pains) and also excessive histamine production.
I was told to take the injection out of the fridge, have few Paracetamol along with breakfast then did the injection. But I was also prescribed Antihistamine like Piriton or Clarityn by my teams as this bizarrely stopped most of the pain developing (reducing histamine production). These were taken as were further paracetamol as per the dose instructions (if required) worth talking with your team about this as not a lot of hospitals do this.
Not a lot of hospital mention the antihistamines but most people do find they help.
Do keep in contact and I hope your first treatment goes well.
It’s a rather short needle but they are clever units so once you put it in and press the plunger the needle automatically retract into the unit.
