Still Have Pain

It concerns me that you don't have direct access to your consultant.  I've always had access to mine, even if it takes her a couple of days to get back to me or one of the registrars rings on her behalf.

You don't mention any kind of consolidation treatment.  After R-CHOP, I had two rounds of high dose methotrexate, which required being in hospital for several days each time.  It wasn't until about 6 weeks after those that I finally had a PET (so almost 3 months after I finished R-CHOP).

It's perfectly reasonable to be anxious at this point and it's not acceptable for the nurses to simply dismiss that anxiety.

Hi Verity5252 and I see it’s your first post so welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Lymphoma ‘type’ is rather different I do understand the challenges of the journey rather well.

I am assuming that you talked with your Cancer Nurse Specialist (CNS)?….. it’s not a reply you should have received and honestly I would call back and insist they listen to your concerns as this is part of their job.

As for the pain, from my many treatments over my years (hit my community name to see my story) pain continuing post treatment is rather normal and in fact the accumulated  treatment effect of your R-CHOP will actually still be working in your body for a good month if not more and this is why your PET scan is only 2 months post treatment so you don’t get a false positive scan result.

I had years of post treatment pain put down to muscle wastage and nerve damage and yes it can be concerning as our minds do go down the ‘treatment has not worked’ rabbit trail.

My NHL type was different but by the time I had my chemo the mass in my neck was the size of a brick but the treatment worked and I am now 8 years out from that part of my journey and things are going well although I have some post treatment ‘left overs’ but these are all do-able.

Try calling again but your PET is only a few weeks away so you will get this results soon.

I will always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos, webinars….

They run regular Regional Lymphoma Online Support Groups for both patients and Carers and a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Always around to chat more.

Hi, Thank you for your reply.  The nurses have been lovely and they told me the Pet scan has to be after a period of at least six weeks which I understand why.  It is just the pain situation which  worried me so that is why I posted to see if anyone else had a good result but still had pain and to see if this is part of the process for some people.

Thanks again for your help and information.

Hi Lolie,  

Thanks for your reply, I haven't had any consolidation treatment.  

The nurses are both helpful and kind and I understand the time scale for the Pet scan which is not the problem, it is the pain I still have and the fact that I waited over two months after being diagnosed before I had any treatment.  I was trying to find out if other people have similar experiences and had good results, just really to set my mind at rest.

Thank you.

I have been on this and the Lymphoma Action support platforms for a good few years and many many folks have had to deal with pains in various parts of their bodies - not in their Sue if I presentation area…… and went on to have great results.

But never let the ‘what if!s’ develop as the stress for this alone can develop ransoms pains……. how active are you? I ask this as there is lots of evidence that you can develop pain post treatment due to your increased activity resulting in your muscle mass waking up…… but in the other hand the lack of activity results in the life if muscle mass resulting in pain…… navigating the post treatment journey can be as challenging as the rest of the journey.