Primary bone diffuse large B cell lymphoma

Hi  and welcome to our little corner of the community. I am Mike Thehighlander and I help out around our blood cancer groups.

PB-DLDCL is rather rare so I am sure that your team are doing everything they can do to treat your presentation the best way they can.

From my long experience initial treatment plans are a starting point and can, if required be altered to further enhance the expected results. 

We are not medically trained but from my experience the most important thing we all can do is trust our teams to do the best for us.

Scans can often show you are clear but there is often a need to make sure that any hidden cancer cells are mopped up that could  be hiding and not showing up in the scan.

Do talk with your team and talk about your concerns and try and understand why they would want to do the treatments they plan.

Hi and welcome to the site, over the years the have been a few people who have had similar in their arm, leg or spine and they too had 6 cycles of rchop so it sounds like your team are following the standard path and being stage 1B indicates a positive outcome. 

The best advice is to ask your consultant to explain why the change from the initial plan and what the benefits are to you, often you find the final plan is not confirmed until the case has been shared with the regional panel, that's what happened in my case some years back. 

As for changing the plan if the scan is clear, again discuss this as again over the years the have been people who were clear at the mid point scan but the continue with the full plan and thats the same with Hodgkins lymphoma too, so I guess the is a reason and thats why getting the consultant to explain everything is the best way forward. 

Keep a daily record of how you mental and physical are and share that at your check ups so your team can support you as best they can.

It can be tough for some but its do-able and when you look back its just a moment in time that fades with the years.

Thank you for your reply I very much appreciate it, I will talk with my team and try and get a better understanding of why they decided on 6 rounds of chemo. 
Thank you 

Hi again  its always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service can give lots of information, support, financial guidance or just a listening ear. We also have our Ask an Expert section, but do allow two working days for replies from our expert team.

Sorry to hear of the state you are in. Have you discussed this with your consultant? Perhaps, I am thinking, a short course of a mild sedative may be of help. This is a very stressful time and both body and mind need help at times. As well, we are all weakened to some degree during treatment, so pacing yourself and allowing extra time for those stairs (even a short break half-way) might lessen the strain on our heart.

Hi Linz13, I was eventually diagnosed after spinal fusion surgery and removal of stenosis, with primary spinal DLBCL that was wrapped around my lumbar spine, I was a fit 61 yr old. I had 6 rounds of R-CHOP and 2 of methotrexate and was incredibly sick, I also had a pounding heart, dreadful night soaks and felt as though someone had put a brick behind my sternum, it was also very painful to walk and my right leg was numb with foot drop, I lost 15kg in weight at my worst and thought I would die! The plan was to give me radiotherapy at the end of the R-CHOP treatment but I responded very well and was told it would not be required. I have to trust that judgement and hope they are right. So, here I am 15 months post remission after a PET scan and doing okay, I have had to learn to walk again and improvement is ongoing. Every day is a challenge with various aches and pains, it is a slow recovery for me some days are very frustrating but I don't give up. I make myself walk 3 to 4 hours a week but sometimes you have to give in to the fatigue and rest. I could not have got through this without the support of my family, friends and the cat. My husband is great he listens to my grumbles every day! I hope this helps you to see there is hope on the other side, it is an incredible test of endurance. These spinal lymphomas are rare it's hard to find other people that have gone through the same, everyone is an individual case with subtle differences. I wish you a good recovery.