New treatment

Hi, sorry to read that and whilst it must be annoying best to look forward rather than back, I recently shared this as an option which is becoming part of list of options in other countries and not sure if its being used in the UK but worth mentioning it:

ask about R squared - rituximab plus lenalidomide (Revlimid) as its proven to be effective and a few studies have been undertaken to compare it against other treatment options, this link takes you to one done in Switzerland comparing R with R squared  and on the right side of the page is links to other studies - certainly worth discussing and seeing if its an option.

https://www.ncbi.nlm.nih.gov/pubmed/31101627

As its not chemo, it keeps those options available should they be needed at some point in the future, which always has to be part of the discussion given once a treatment option is used on fnhl, that's it and it cannot be used again. 

regards

John 

Thank you John, will keep this information in mind, as well as your good advice to only look forward.

regards  

Ilene

Hi Illene,

Sorry to hear about that.I was diagnosed with follicular lymphoma in the spine in  nov 2012.The lymphoma was located between L4 and L5 in  my spine.I was treated with RCVP chemotherapy.After I had finished that my haematoligist advised me have radiotherapy because of the position of the lymphoma and I had 16 treatments.This was followed by maintenance therapy of Rituximab every 2 months for 2years and so far so good .It was a very long process and I was very happy when it was finished.I live in Thailand and I had all my treatment there and sometimes communications are not so easy.I believe my treatment was similar to what I would have had in the U.K.

I had a few hiccups and I required surgery for a hernia and a hip replacement which I was not aware of before the lymphoma.

By the way I will be 73 next month.

Anyway good luck and hope all goes well for you

Regards

Mervyn

Hi Mervyn,

Thankyou for this positive post, I am so pleased that you have had a good result and apart from as you say a few hiccups are doing well.

I too had RCVP which commenced December 2013 then 2 years Rituximab, my problem was that it was not picked up at end of treatment that the position of the lymphoma in the spinal area needed further treatment. 

Due to recent infections, fatigue and  back pain. I had CT and MRI scans in May, which have highlighted this oversight and I have been advised that radiotheralpy is needed in the spinal area.  But I have been told that radiotherapy might not be possible, I will have to wait till next appointment to find out what is happening.  Im sure I dont have to tell you that the not knowing and waiting to see what is to be done, is often the worst part.  

Which is where sites like this and people who respond like yourself is so massive a contribution to mental well being.

Thankyou once again for sharing your experience and good wishes.  

Best wishes to you for your future health

Regards 

Ilene