Hello everyone.
I was diagnosed with DLBCL stage 4 in the mesentery in November 22.
After 6 rounds of R Chop I was in remission in March 23. In August 23 we did a lung and upper and lower abdomen CT Scan
and all blood tests and all was clear.
Since mid August I have been experiencing pain in my neck under the ears and at the back of the neck as well as on the shoulders.
Has anyone experienced something similar? I have also had a couple of times night sweats and I am getting really worried as my
next check up is only due in February 24.
I also tend to freak out about the slightest pain and I am struggling to take reucurrence out of my mind.
Best wishes to all,
Poly
Hi Poly and a warm 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 don’t have DLBCL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of NHL (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
First, good to hear that your scan and bloods in August were fine....... but I can totally understand when new aches and pains kick in..... I never had any night sweats in all my first 16 years then had some a year after my final treatment..... "your bodies internal thermometer is just confused Mike".... my consultant said.
How old are you Poly?........ this may be a woman's age thing!!!!!
In these early days the initial default setting should be to call this in to your clinical team, talk with your SCN (if you have one) and get their opinion on this.
Other non Lymphoma 'medical stuff' is going to happen to you so there are times that you may have to go back and see your GP and talk things through..... I have done this a lot over the past 8 years since my last treatment, had MRIs, CTs, biosies, bloods and nothing major has been found and most importantly, nothing relating to my incurable Lymphoma relapsing.
Learning to live the post treatment world and trust in your body takes time to develop. It is totally normal in the early days to associate every ache and pain back to your Lymphoma........ I was the same but now have developed a clear understanding as to what to look out for.
I still have random aches in my neck, shoulders, back...... my consultant told me early on after my treatment was finished "........ Mike your body has been through a lot, the treatments you had did knock your body about badly so this may take far longer than you like to get over all this...... you may even be left with some aches that will never go away"........ but the bottom line is I am alive and even although my type of Lymphoma is incurable the treatment I went through (see my story in the link at the bottom) has most likely put my condition to sleep for a good period of time.
You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.
Always around to help more or just to chat ((hugs))
‘Talking’ with others can help you to develop the post treatment skills of living with the what if’s?
You may want to check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run regular Support Platforms..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
