NHL relapse after 10 months

Hi all, it's me again! Hello to susan-d and good luck with the r-dhap. My pet was rescheduled for tomorrow as the radioisotope failed its testing today. Pity as I saw consultant today and if everything's clear he wants to push forward with stem cell harvest in about a fortnight. My heart still doesn't feel right but he did say it could be down to the picc line delivering chemo into the heart. Unfortunately where the mass was in the thigh seems to have damaged the venous circulation in the lower leg and my foot and calf are swollen (lymphoedema)

So, looks like dropped foot is for keeps (ironic as I never used to walk anywhere if I could run) and I'll need a modified car.... I've driven for 42yrs and really miss it. 

I really hope this puts me in remission and pray I'm one of the lucky 50% 

All the best to everyone

Lynda

Hi Lynda, first a tag for .

Thanks for the update Lynda, your catalogue of medical issues continues to grow but yes, you get yourself a modified car and a blue badge - you deserve a medal of some sort.

Keeping everything crossed that you hit remission and the cell harvest can go ahead.

((hugs)) xx

Hi Lynda, 

yes, a modified car, definitely.....(right or left footdrop? - my OT hat popped on then!) and yes a Blue Badge should certainly be applied for. 

As for scanners going offline.....pants! 

Keep on keeping on and hope things work out for you from tomorrow onwards!

hugs xxx

Hi all! Yes, moony, i have the blue badge...the irony of this...I too was an OT for 34yrs....it's different on the receiving end!

Advice where to continue posting as stem cell transplant off the cards for the time being...

After 2 courses of R-DHAP...

Bad news from pet scan on Wednesday....thigh mass has shrunk SUV 8 so plan for radiotherapy. Oddly the small FDG avid area in small bowel from previous scan is larger at 3cm..suv 13

He's still thinking lymphoma and options to biopsy (oowww)&/surgery to respect. It's outside the bowel itself...the original abdominal mass was mesenteric.

He did mention relapse, refractory, prognosis, car-t....

But we'll just take a day at a time..

I'll know more on Wednesday. Surgery would be urgent.

And I .thought SCT was serious...what do I know?

Regards, Lynda

Hi Lynda, so sorry to hear about more complications and all I have is some more Highlander ((hugs))

Keep pushing for a plan as this helps turn the noise in your head down.

Where to post? I would still suggest the NHL Forum being a good place as it covers a lot of bases and dip into this forum if required.

Hi Lynda, really sorry to read you latest update, may be worth asking about TREC chemo, I know someone who struggled with refractory T Cell and it kept them in remission and helped them towards a halpo transplant and it has been used in trials on DLBC which is refractory. Also cannot remember if you were being treated at the Christie or not but may be worth casting the net wider for views on the way forward.

sending positive vibes for a successful plan

John   

Hi Lynda,

yes it’s very very different being on the receiving end, (I am too, for bc) but glad you’ve already got a blue badge. 

Gutted for you though, but I hear CAR-T can work for NHL, not yet been successful for HL. And if you’re at the Christie they have fingers on pulse for cutting edge treatments, as a family we know this very well.

Sending hopeful, encouraging hugs xxx, 

Hi Lynda

we have similar stories - I was given the all clear in Sept 18 after 6 rounds of R -CHOP for DLBCL in my lungs.

in February 19 we found a lump over my left shoulder blade which on biopsy was found to contain lymphoma cells.

a PET scan confirmed the return of the lymphoma in my right upper quadrant but none in the lungs thistime.

i had a PICC line installed before my first R- DHAP treatment three weeks ago. I was really dreading it but insertion and use both fine.

im back in hospital ( Inverness) at the moment having taken a real knock back from the first chemo - got taken off the island ( I live in the Outer Hebrides) by air ambulance last Saturday but am home tomorrow. I should have had chemo 2 starting on Monday but now have another week to recuperate so chemo 2 will be 6th May,

i have an appointment for my SCT assessment in Glasgow on the 11th Jun

you are a few months ahead of me - hope treatment is going ok for you

sue

Good morning Sue , and a big hi from Inverness, it is a small world.

Over my years of treatment I have come to know all the staff at Raigmore Haematology Clinic and Ward very well as I have spent a large part of my life on and off over the past 5+ years with them.

I have also had two Allo Stem Cell Transplants (with cells from my brother) down in Glasgow.

My two SCTs were in The Beatson, but most of the SCT work is now done across at the new QE hospital.

The Glasgow SCT Team are great and are one of the top teams on the UK. So if you end up down that route you are in very safe hands.

Living on the Western Isles just adds another dimension to treatment that most people can not comprehend as you are having to come off the island all the time - it just brings a bigger pressure to it all.

Its important that you prepare yourself for the SCT assessment as it can be a challenging meeting but I am willing to help out as best as I can, just post your questions.  

((Hugs))

Hi Sue,

being at the mercy of the air ambulance has to be an interesting scenario! Will they also fly you home? 

Hope all goes well for you

hugs xxx