Intravenous high dose Methotrexate

Hi Mrs D me and welcome to this little corner of the Community.

I had a different type of NHL and different treatment journey so let’s look for folks who have had the same treatments as you to come along.

During my years of making decisions on what my team was proposing (see my profile) yes the balance of risk and benefits had to be considered...... buts for me it was more life or death but I basically went with the advice I received from my team....... and 5 years on from my last treatment I have no regrets.

I do understand your concerns about staying in hospital during these crazy times but I have talked with many people in this community and other Lymphoma support communities who have been in hospital, some for rather longer periods of time and felt very secure.

Continue to talk this through with your team and come to a decision that you are happy with and move forward.

Hi and welcome, the best advice `I can offer is have the discussion at the end of treatment and share your concerns and talk through the risk the consultant is trying to manage and the risk of being in hospital, you will be around 6 weeks away from needing to make a choice and things may be different then. 

I had a similar but different discussion 11 years ago when my 8 rounds of rchop finished and the consultant wanted me to have radiotherapy just to be sure no disease was left as I had a lot of scar tissue and at the time it showed a false positive on the scan results. We talked through my concerns and the risks and agreed I would have a pet scan, go on watch and wait for 3 months and have a further pet scan. Only then did they confirm I was in remission and the ct scan had been a false positive. Hence the advice to have an open and frank discussion and then make your decision and its important that you are happy with it once its made, as I was.

Sounds like you are doing well otherwise and managing the side effects which is a good sign.  

John 

I've done the high dose methotrexate protocol.  It's not fun, but the degree to which it reduced the likelihood of me having CNS involvement was significant.  Knowing how bleak the outlook is for CNS lymphoma, I felt obliged to do what I could to prevent it

I had a severe reaction to my second intrathecal dose of methotrexate, so I was definitely concerned about how I would go with the high dose, IV protocol.  I didn't have any adverse reactions and they look for and stay on top of known complications.

Thank you Lolie, I need to understand my risk level.  I will ask at my clinic appointment.  

Thank you, riding my rollercoaster!

Thanks Mike, it's a difficult decision

I had a large mass in my right maxillary sinus cavity, so I was classed as being at high risk for CNS involvement.  Because I'd had a bad reaction to intrathecal methotrexate, going ahead with the IV protocol was still a difficult decision to make when I knew that it might have been unnecessary.

Thank Lolie, I've decided to go ahead, I have had a look at research and national guidance.  I had four sites including uterus and ovary, bit unusual, unusual things do the unusual! Hopefully all will go well.  

I hope all is well with you too?

• Many thanks 

My PET in August and my CT scan a couple of weeks ago both showed me to be in remission from lymphoma.  So far, so good.

Brilliant! that is such good news.