I don’t know where to start. I have been reading through your forum for a few months now and I can say how helpful it has been. Overwhelmed with new diagnosis of my mum with high grade aggressive lymphoma. Currently receiving chemotherapy. Doctors felt R-CHOP is not enough as there is high chance of relapse, and started intensive inpatient course of chemo. No sleep, no concentration a part from reading about this and the relapse /remission rates. Not sure if someone has information or experience with such aggressive lymphoma. The support has been great from the friends and relatives, but it is still too much to take.
Oh @Wisam thank you so much for posting, it takes a lot of courage.
It must have been such a shock for you and your mum, I know it took me so long to take it all in.
I think I felt that I had entered this rollercoaster that I could not get off and everyone was speaking this new scary language.
These days medical people don’t just tell people what treatment they are going to have they have to tell us all the pros and cons and scenarios.
I am so glad that you have support from family and friends it makes so much difference. It took me such a long time to realise that it is a strength to ask for help.
I am useless on the medical side but it sounds as if your mum is on a treatment plan and the good news is that the plans are individual these days.
As you have realised we are now here for you, the Blood Cancer UK website has a lot of information on it and if you would like to talk to someone the Blood Cancer UK support line is also there for you.
I really look forward to hearing more from you and please do keep posting.
Perhaps this is the time to really look after yourself.
Hi @Wisam, Welcome to our wonderful forum, I am so pleased you have found some help from our pages and i hope this continues for you. I am so sorry to hear about your mums diagnosis and i can only imagine what a difficult & worrying time this has been for you all.
As @Erica has previously mentioned, if you do ever wish to talk through anything at all, our support line is always here for you.
May i ask how your mum is keeping during her chemo regime? We understand how so very difficult it can be to watch a loved one go through something so tough and appreciate it can leave you feeling completely overwhelmed.
Caring for others from the side lines we know can at times feel impossible. However please do know that if you ever need a listening ear or some general support- we are here for you- 0808 2080 888!
Take Care, Lauran
Hi @Wisam. How have things been the last couple of days x
Hi - I have aggressive DLBCL. I had inpatient chemo which does work for a lot of patients. It is hard going, but I did recover quite quickly from the effects. My lymphoma however is very aggressive (which is very rare) and I did get new tumours. I was then lucky enough to get CAR-T therapy last August. At my last check up they said 2 lymph node tumours were cleared and and I have one stubborn tumour (very small) on one of my ribs. The CAR-T cells cannot access the tumour well because of the bone. However I have no new tumours or cancer markers showing in my blood so the CAR-T therapy is working. I am now two thirds of the way through a low dose radiotherapy course to tidy up that old remaining tumour. From what I have been told there are also other immunotherapy treatments that can be used on some people if they relapse as well. I feel pretty good in myself now, just a bit tired from the radiotherapy. It is scary getting that diagnosis, but I have found the treatment and care very good. Please get in contact any time and look after yourself during this stressful time too.