Could the immune suppression allow a cancer to begin or take hold? I started rapamycin on 21 June and around that time a lump appeared on the back of my neck, shoulder level, to the right side. Along with it came a lot of constant pain all over my neck, head and shoulders. I still have the lump and pain 3.5 months later. I stopped rapamycin after 5 weeks (1mg, 2mg and then 3 weeks of 3mg) because I started taking Diflucan for fungal toes. When I stopped that I restarted rapamycin on 11th September, so for 3 weeks I’ve had 1mg, 2mg and 3mg. Next dose due tomorrow.
An ultrasound shows that the lump is either a reactive lumph node in a strange place, or a more scary peripheral nerve tumour. Does anyone think that rapamycin has anything to do with this? It did start around the same time I started rapamycin. And should I stop taking it? Although the lump did not go when I stopped taking rapamycin for 2 months. I am very worried. Thanks.
What is the opinion of the MD who read the ultrasound? Does he/she know you were on rapamycin?
Seems to be best to ask your MDs, instead of people here, who have not seen your medical records.
Agree with @JuanDaw.
You may need biopsy, but that’s a conversation to be had with your doctor.
I see no good reason to continue Rapamycin.
No idea if lump is related to Rapa use.
I wouldn’t be able to tell them - they would not approve at all.
Good luck on this. Perhaps Blagosklonny’s recent writings could be of help. Has he stopped rapamycin?
I think you should stop taking it and have a biopsy done to know for sure what’s going on.
The neurosurgeon thinks that the lump is more likely to be a reactive lymph node. It has also started reducing a little in size. There, I am wondering if going on rapamycin caused the immune system to jump into action causing a raised lymph node in my neck. So although I want to continue to take rapamycin to benefit CFS and improve my health, I’m now very wary of doing so without medical advise. Does anyone know of a doctor in the UK (or online from abroad) who I can work with regarding going back on rapamycin? Thanks.
Lymphadenitis is the medical term for enlargement in one or more lymph nodes, usually due to infection. Lymph nodes are filled with white blood cells that help your body fight infections. When lymph nodes become infected, it’s usually because an infection started somewhere else in your body. Rarely, lymph nodes can enlarge due to cancer.
Alex, sorry to hear that your lump is still there. Rapamycin promotes bacterial infections. You probably had such infection somewhere in your body without knowing it. Rapamycin contributed to its growth and your lymph node reacted. Don’t be in a hurry to go back on Rapamycin. Take care of infection first.
Ooh that’s scary. Thank you. Alex
Late to this but thought I should chime in.
I think the UK has a few more options now. For ex in London:
They mention rapamycin.
Pricey affair though. They seem to offer a subscription service re longevity starting at £875 for initial consult and £75 month thereafter. https://www.harpalclinic.co.uk/wp-content/uploads/2023/11/Longevity-medicine-memberships-edited-28.11.23.pdf
To note they will be having a webinar on their longevity approach on Jan 9 '24 should anyone wish to signup. Its free.
This is interesting. I’ll ook into it. Thanks.