Concerning new lump for my husband

Hi Mumonamission unfortunately ‘things’ do come along post treatment….. and there is a balance as to who is the go-to with this.

Advanced nurse practitioners are very experienced and it looks like they have done what they can do so this would trigger an escalation for a GP appointment.

But you can certainly look to get an appointment with his Consultant……  but there may be a chance that his Haematologist will say see his GP

Thanks Mike

I needed to hear your voice of reason ️

I think we’ll call GP surgery again and ask for a GP to have a look.

It probably isn’t anything to worry about and in the past wouldn’t have caused any concerns ‍♀️

Navigating the post treatment world is all about building up confidence and accepting that all the ‘things’ that will come along are most likely not Lymphoma related…… but often are related to the treatments long term effects on the body…… this is only developed through experience ((hugs))

An update on husband.

After the antibiotic and hydrocortisone cream didn’t work I contacted the GP again. They wouldn’t offer an appointment but asked for up to date photos, which I sent. GP was still convinced it was an infection and prescribed a 7 day course of oral antibiotics, no change, in fact I thought it was getting worse. The GP hadn’t even examined him.

I contacted his CNS again and said how worried my husband was and she asked him to go into the day unit and she’d ask a dr to take a look.

The dr wasn’t sure what it was either but shared a photo with their dermatology colleague and requested a biopsy. It was then about 6 weeks since we’d informed them about the lump. 
Skin shave biopsy was done and we got the results back at his haematology appointment on Monday. The lymphoma has returned. We were both devastated to hear this. There’s a part of me that’s very angry as I feel our worries weren’t listened to, especially as my husband had a lump on his shoulder when he was originally diagnosed. But anger isn’t productive is it.

It looks like the options are now CAR-T cell therapy, radiotherapy and some bridging chemo. 

The thought of doing this again is depressing but I know there are many of you that have and we’re all here to support each other. 

Thank you for reading x

Hi Mumonamission and sorry to hear this. We always hope that ‘new’ things are not a reoccurrence of Lymphoma and most are…… but at times they are a relapse…… I have relapsed multiple times over my 25 years and I am still here.

I have had 2 Allograft Stem Cell Transplants but I have talked with many folks who have had CAR-T……. and the feedback is that it’s a very effective treatment and less challenging than Stem Cell Transplant.. 

As you will see, this group is on the slow side and this may well be down to the high profile of Lymphoma Action.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

All the links I use are taken directly from their website and I have volunteered with them as long as I have with Macmillan…… if you are in the UK you can widen your support and information base by checking them out

They run various Support Platforms…

I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……

Their Closed FB group alone has over 5800 members and unfortunately you would most likely bump into me on there also ;)

They also have a great Buddy Service where you and/or your husband can be linked up with someone who has walked the same CAR-T support/treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Always around to chat ((hugs))

Thank you Mike

i remember first reading your story and being astounded at what you’d gone through. 

Unfortunately I’m not on facebook but I have found a lot of good YouTube videos and podcasts on the Lymphoma Action site. 

Hope you’re keeping well and thank you for always being there for forum members. 

All the best

You don’t need to be on Facebook to access the very good monthly online Zoom Support Groups or Buddy Support Services ((hugs))

i am so sorry to hear that his lymphoma has returned. Not easy for sure but I hope that you both can think of positive things every day and get through this. 

Thank you so much, that is really kind of you

I hope you’re doing ok?