Hevvur's blog

In Patient and it begins...

2010-10-11T19:26:39Z

Well, i've been admitted to The Christie today to start my chemo.

Not even been here that long and i've lost count of how many drips i've had!

I'm connected to 3 pumps at the moment - what a pain to get to the toilet lol

Update so far

2010-09-28T06:19:40Z

I tried to come on yesterday to update, but I just couldn't manage it.

As you know, I was refused funding by my local PCT earlier this year for CHT-25 treatment down at the Royal Free in London.

People rallied round and raised enough money to send me at the end of June.

I had a scan after 4 weeks which showed great signs - neck was no longer active, under arm shrank by 2cm, chest mass shrank by half.

I had a scan last week (about 13 weeks post treatment), which unfortunately shows that all my nodes are very active - moreso than before I had the treatment, they have also all started to grow again, especially the one under my arm.

Im devastated to say the least.
I start ESHAP chemo in 2 weeks, hoping to go onto an allogenig stem cell transplant afterwards.

The first ESHAP will be given at 75%, as i've still not fully recovered from the last treatment. Hopefully the second will be given at 100% - depending how I react to the first.

Can you believe it......

2010-06-27T16:39:17Z

Can you believe it............i'm actually in London, and start my treatment tomorrow!!

I'm staying in a hotel tonight, and have to be at the Royal Free Hospital in the morning!! They will then take me down to Nuclear Medicines for the treatment, and I will then begin my 1 week in isolation!!!!

It all happened so fast, I only got the phonecall on Thursday evening, and the doctors secretary said "You know when you come in for your treatment on Monday?"

And I said "THIS Monday?!"

So it was a bit of a rush to get everything ready - book train tickets, and a hotel for tonight (too far for me to travel that early in a morning), pack my stuff together etc!

But now i'm here, and start tomorrow :)

Am I actually getting anywhere?!

2010-06-22T08:40:13Z

Well, we've raised the money for me to have treatment in London. Paid the deposit (£10,500), had the tests, now just waiting for test results from the bone marrow biopsy.

MUGA heart scan results were fine.

PET scan results.....not sure if it's good or bad news.........good news is that it's all still above my diaphragm.

Bad news is its pretty much everywhere above it - now spread to my left side :(

List as follows:

Cancer in: right neck, left neck, right under arm, under right breast muscle, in chest (pressure causing sternum to bow outwards, and also nasty rash & broken blood vessels).

Bone marrow results still pending.

A small update......

2010-03-29T15:40:51Z

I spoke to the consultant at the Royal Free on Friday (26th March) - no update - we are STILL waiting for funding from my local PCT.

I also had a meeting with the local Central Advocacy Services on Friday - and i'm hoping they can get in contact with my local PCT and find out whats happening. They agree that the time i've been waiting is too long, and not acceptable. So lets see if we get anywhere!

I had my second dose of Vinblastine today. Once again 4 attempts to get the cannula in - all very painful, and Dr's and Nurses said it would be better if i had a central line, so they have arranged for that to be done on 9th April - a few days before chemotherapy.

It will be my second central line, and i'm quite looking forwards to not being stuck by so many needles every time I have to go to hospital!

I'm in some discomfort with my neck, and I spoke to the Dr today at Christies who said it *could* be where the tumours are shrinking, and coming 'unstuck' from tissues that surround them, but other than that, he didn't offer any other explanation!

Thats about all there is to update for now....!

I actually have an update.....

2010-03-12T15:22:44Z

Hi everyone, and thanks for the kind messages :)

I went down to the Christie today, and saw one of the main doctors. (Kim)
She agreed it's time they intervened, and they have decided I will be having Vinblastine every 2 weeks, until I get accepted on the trial - then I will stop, and have to be off chemo for a month before I start the trial.
I start next Wednesday.
I've had this drug before, 8 years ago when I first had chemo, but never on it's own.
I've also been put onto steroids again.

I've got multiple new tumours in my neck (both above and below the original ones), and a new one under my arm, just below the original one.
The original one under my arm has grown more than 10 times in size since September.
Not sure about the ones in my chest, as they didn't do an x-ray.

I'll keep you all up to date on whats happening!

Heather

When it seems like the world hates you...

2010-03-08T17:04:16Z

I've now not had any treatment since August.

I went to London nearly 7 weeks ago for a consultatin with regards to going on a trial, because chemotherapy didn't work, and I can't have anymore radiotherapy, and the hospital down there (Royal Free) had to get funding from my local PCT.

I've now been waiting all that time, and my PCT only met last week. Just had a call from the Royal Free to say my local PCT haven't decided, and need more information before they can decide. So now I have to wait even longer for a decision.

I just feel like im so unlucky, and that im being ignored, and never going to get any treatment.

I think I have another lump in my neck, and im so paranoid it's all going to spread and be totally untreatable.

I'm going to phone Christies tomorrow and try and get an appointment, because I just cant deal with this anymore :(

Movement at last?

2010-01-15T14:23:07Z

Yesterday I still hadn't heard anything about my stay in the Royal Free!

I spoke to the Dr at the hospice, and also my psychologist. The psychologist suggested phoning the lymphoma nurse, rather than my consultants secretary, as i've already been on contact with the secretary and had no luck!

Jane (Lymphoma Nurse) was great. She went to find Adam, the Dr who deals with trials, who instructed someone to e-mail the Royal Free. By the end of the day, they still hadn't heard anything from the RF, so decided to make me an appointment for Monday (At Christies) to check up on me, as i've been experiencing a few new side effects (including marks on my skin where the tumours lie).

This morning I received a call from the RF! YAY!

I've got a clinic appointment on Wednesday, at 1:30pm. Good job it's at that time, because it's a 3 3/4 hour drive each way! Hopefully they will give me a date for my treatment (which is called Basiliximab for anyone who doesn't know, and this tagrets the CD25 marker!)

So fingers crossed that something will start to happen next week please...as i've started to get anxious!

My feelings are numb...

2010-01-03T21:03:59Z

Well i've had a lovely x-mas. I stayed over at my Mums house, then went up to my new boyfriends house on Xmas afternoon, and spent the night there.

I've spent every night with him apart from 1 since then, and we've had loads of fun.

But this bloody cancer is always in the back of my mind. I'm back on pain killers, as the pain is becoming unbarable. I've tried not to complain when i'm around people, as I feel i'm bringing them down too.

The swelling over my right clavicle is back, and as big as ever, and the lump under my arm has grown and aches.

My chest is the worst (where the pain is). I can guarentee the tumours will have grown, as I am even sore to the touch now :(

I've got to phone Christies tomorrow, as I have still not heard from London about the trial, and I am getting worried as the pain is increasing, and I really need some sort of treatment before it all gets out of hand.

I'm trying my hardest not to get depressed, and I think i've just about made myself 'numb' about the cancer around people now. But this is the first time on my own for quite a few days, and it's all coming down on me now.

Daycare at the hospice has been closed over x-mas, so i've had no one to talk to about it there, and haven't seen the doctor either.

I'm actually starting to get scared for the first time.

It's been so long since any treatment (August), and the Drs know all my tumours are growing......

Results were today...

2009-12-07T14:01:00Z

Firstly, thanks to those for the lovely comments on my last blog :)

Now for the results...........

The tumours in my chest and neck have 'only' grown slightly.
The one under my arm has grown a little more, and it now 2.5cm.

I've been waiting for test results to check for a 'cell marker' called CD25. I've found out today that I have this cell, which means I have been accepted onto a trial at The Royal Free Hospital in Hampstead - which is along way from us!
I will be having a treatment called Basiliximab - which is like radiotherapy, but administered through a drip, and only attacks the 'CD25' cell marker, so won't damage other cells (Hope this makes sense!).

I will be in hospital for about a week, and stuck in a room as I will be radioactive!

In the mean time my fertility results are next Monday.

Also, today they have taken my Hickman line out.
It's not been used since August, and is just an infection risk!
They have to cut part of it out, so i've come home nursing 2 stitches, and the local anasthetic is wearing off, and it's rather tender!!!

Results tomorrow...good or bad?

2009-12-06T09:34:54Z

Well, it's results day tomorrow.

I finished chemo in about August. I had a CT and a PET scan in September, and got the results, which werent great. (See my blod titled 'Not great news at appointment yesterday).

EVen though I was PET positive, and one tumour had grown, they decided to leave me till the end of November, when I would have another scan. (30th November).

Now to me...when the cancer has grown whilst i've been on chemo....it's most likely going to grow in the time i've NOT had any treatment - which is nearly 3 months! (I know that isn't always the case, but thats how I see it)

I've been having lots of pain, and the Dr at the hospice I go to tried to get my scan brought forwards, but my consultant & secretary ignored my request, and ignored the Hospice Dr's calls and faxs - I'm really miffed at this, as my consultants are always telling me if you have a problem, ring us, and we'll bring your appointment forward etc.

Well, I had my CT scan on 30th November, and the results are tomorrow. We've had one good piece of news, which is that my sister is a good match for my Stem Cells, so when I'm eventually well enough to have my transplant, she will be the donor.

The dr's have said I need to be in remission before I have the SCT, but they just don't know how to get me there :(

Lets hope tomorrow brings some good news.....

Things like to get complicated

2009-10-19T15:08:44Z

Since my last hospital visit, when they told me the chemo hadn't worked, I've been very down, and finding it hard to cope.

Things have come to a head now, and my fiance is moving out tonight.

He's more interested in smoking weed, and staying over at his friends house, than me.

We've been through all this before, talked about it etc, and nothing changes.

I need support. I need someone who will be there for me, not ignore me.

I understand he's finding me being ill hard, but he likes to pretend i'm not ill, and even txt me from work the other day saying he thinks it will be good news at my next hospital appointment, which proves he doesn't listen to a word I say.

I need to fight for my health, not fight for a relationship that I cry about nearly every day.

Don't know if we're still going to be together and live apart, but I don't think it's going to work, because nothing will change, apart from the fact we won't live together.

*sigh*

Not great news at appointment yesterday

2009-09-29T14:28:04Z

I went for my 5th chemo 3 weeks ago, to be told that I had responded well, and didn't need number 5 or 6.
The docs brought my CT and PET scans forward, which I had nearly a fortnight ago.
I was supposed to go and see the doctor about the STC last week, but I got a phonecall cancelling it - of course no one would say if it was good or bad news on the phone.
I already had an appointment for today, so off we went this morning....

Unfortunately today's appointment was mainly bad news, not good news.

My PET scan showed up positive cancer cells - which means all my cancer is still 'active'.
The tumours in my chest and neck have shrank - which is good, but they are still active.
The tumour under my arm has grown by 17%.

My cancer has (in simple terms) become 'immune' to the chemo regeime I was having.
The docs have said no more chemo because it's obviously not working - this is because it is a relapse, so the cancer has got used to the drugs.

My transplant (STC) I was going to have has been cancelled.
I will still be having a transplant, but it will be from a donor, and won't be for at least a few months.

I will be put under a clinical called 'ReACH' (Reduced Intensity Allografting for Chemosensitive Hodgkin Lymphoma).
Unfortunately this hasn't opened yet, so I have to wait for it to open, whch will hopefully be at the end of this year/start of next year.

I have to go back to hospital in a month to see if anything has 'grown'. If it has, and if my cancer contains a particular cell (CD25) then I am hopfully eligable for a type of immunotherapy treatment, but I will have to travel to London for it, as the hospitals up here don't do it at the moment. (I can't remember the name for this treatment, but it began with a 'B').

So, there you go.......I think thats everything......