New member

[Hevvur]

Hi everyone, I was searching for something online today, and came across this forum and thought I would join, as it's always helpful to talk to others in your situation!

I'll tell me story, and apologise now if it's a bit long!

I was first diagnosed in 2002, when I was 19, with a large (19x10cm), stage 4 tumour in my chest. (right lung cavity/windpipe and pushing heart to the left)
I had a needle biopsy for it, and didn't have any of the 'normal' symptoms.
I was treated with 6 months of chemo (ChIVPP/EVA), and then had 15 days of radiotherapy.
I was then told I was in remission, but had scar tissue on my wind pipe.

Then last year (Feb 2009) I discovered a lump in my neck. I knew straight away what it was, even though I had previously had no lumps.
I had a biopsy, CT/MRI and PET scan. The PET scan was new to me....as they didn't have these 8 years ago!

I was then diagnosed with Stage 2 Hodgkins Lymphoma, with the main tumour being in my chest again (same place), but smaller this time (10x6cm), lumps in the right side of my neck, and also one under my right arm.

I underwent 4 sessins of chemo in 2009 (GDCVP), and my doctor said they would do a SCT once the chemo was finished. I harvest my stem cells after my 3rd session of chemo.
An x-ray taken half way through looked like the chemo was working.

Unfortunately a PET scan at the end of the chemo said otherwise. My tumours had grown.
As I'd had radiotherapy 7 years previously, in the same place, it wasn't an option this time.
Doctors started looking at different trials, but most I didn't fit the criteria for.
They also tested my sister for her to 'donate' her stem cells to me, and luckily she was a blody good match!

I was then told about a trial that had been running in London. (I am based at Christies, in Manchester, England).
Unfortunately the trial had finished (phase 1), but the doctor was still treating people as long as their local PCT (primary care trust) funded the treatment.
The trial is the CHT-25 trial.

I was tested, and fit the criteria for the treatment, so went down to London in January this year to meet the team and start the funding process.
Unfortunately, my local PCT refused to fund my treatment, but took 13 weeks to decide this, instead of the usual 4-6 weeks.

In this 13 weeks my tumours grew substantially, making it hard for me to breath. I developed another under my arm, lots more in my neck (which distorted my neck), and also new ones on the left side of my neck and left collar bone. I also got an ugly purple rash on my chest, and my sternum twisted outwards.
I went on to Vinblastine to try and give me some shrinkage, but this didn't work.
Eventually I had to start on morphine as the pain got so bad.

Because my PCT refused funding, we went to the local paper, who featured me on the front page, lots of people started sending money in, and we started a fund to help raise the money for my treatment.
If the PCT had paid, it would have been £3000.
But because I had to pay myself, it rose to £16,000!!!

It took the public only 2 months to raise the money, and at the end of June I had the treatment.

It's been 4 weeks since the treatment, and I had my first PET scan today (with 2 more to follow at 8 and 12 weeks).
So far things are looking good, i'm off the painkiller, the rash has gone, and the tumour under my arm has gone a LOT smaller!

I've still got more treatment ahead of me - chemo (probably ESHAP), and then a SCT (not sure if they will use my own, or my sisters cells yet though).

Well, thats me, sorry for it being so long!

[Coop73]

Sounds like you have been through alot. Noone wants to be in this club, but if you are I can tell you the people here on this forum are the most compasionate and informed of anywhere on the net. Hopefully your tumors will continue shrinking before your transplant. Keep fighting.

[TannerNYC]

Wow, what a story! I'm sure you're relived that the tumors are finally shrinking!

Welcome to the board, you will find a lot of support here, and people who have been through the same things. I had ESHAP and a SCT (Auto) recently, so if you have any questions please let me know!

[marshap]

Welcome, Hevvur! I am so glad to know the CTH-25 worked for you!

Good luck with the transplant!

I was planning to apply to the compassisnate use part of the trial (since I had SGN-35, I wasn't eligible for the trial itself), and I talked to the financial person in London. I was ready to pay, but we found a similar trial in the US. I didn't respond to it anyway.

Hugs,

[Hyla]

I am kind of surprised that you have 2 more PET scans scheduled so close together.
I dont' think there is good research on having PET scans so close together (afterall, the tracer sugar is radioactive).

[jerbear]

Originally Posted by TannerNYC

Wow, what a story! I'm sure you're relived that the tumors are finally shrinking!

Welcome to the board, you will find a lot of support here, and people who have been through the same things. I had ESHAP and a SCT (Auto) recently, so if you have any questions please let me know!

Same here.


If you have any questions or want to vent just PM me.

Tanner is just a little more fresh out of SCT then I am but not by much.

[Hevvur]

Thanks for the messages everyone!
Results from the scan tomorrow...!

Originally Posted by Hyla

I am kind of surprised that you have 2 more PET scans scheduled so close together.
I dont' think there is good research on having PET scans so close together (afterall, the tracer sugar is radioactive).

They scan everyone who's had the treatment at 4, 8 and 12 weeks.
I know normally they don't like doing so many radioactive things, but hell, iI was glowing after the treatment lol
But I think as it's a trial, they need to record how well the treatment is working (if at all)

They are doing PET scan trials now apparently!

[kady]

Amazing story..like so many on the boards here..and of corse..welcome! You will find here a great group of knowledgeable, supportive people who have been through it all...
So glad to read you got the treatment you needed, and the public stepped up to the plate for you to get it...
Take care..
Kady

[Hevvur]

Well, the results of last weeks PET scan are in...............good news is the nodes in my head/neck are no longer active. They are still swollen (thickened).
The tumour under my arm was just over 6cm, is now just over 4cm.
The tumour in my chest was just over 4cm, now just over 2cm.
All fluid from lungs now gone.

[WardyBoy]

WOW, great news.

I have been following your progress from the UK Lymphome forum and your web page \ blog for the last few months and i know that it has been terrible for you.

This news completley backs up your effort and determination to get onto this trial and must be amazing news that it is working. Self funding is a massive but clearly worthwhile step.

Really pleased for you, the Drs must be happy too? And great news for another approach to attacking refractory Hodge.

When is your next dose?