[TinaPParticipant]

Hi,

Went to see haematologist this morning, fully expecting to start on the treatment next week. But as my shoulder needs to heal some more, he has given me the 11th April as a start date.

I am a bit disappointed, as I just want to get on with it!

Thanks for your support,

Tina

[tomParticipant]

Hi Tina

Am sorry to hear you are having to delay your treatment 🙁 because if you are like me I want it all to start "Yesterday" but am sure its for the best, get shoulder all better then you can start again 🙂

Good Luck and roll on April 11th, its not long now xxx

Love

[mhnevillParticipant]

Hi tina

Aren't we all different. You can't wait to start treatment – I can't delay it long enough!

All best wishes to you. Hope the shoulder heals well, I know they can be tricky.

Love.

Mavis

[TinaPParticipant]

We certainly are all different. I want to get started as I have a lesion in my lower spine, which is causing a lot of pain. If it gets much bigger, it could compress my spinal cord and cause all sorts of problems.

Love

Tina

[DaiCroParticipant]

Many commiserations on that score Tina.. that's how I started… but they failed to diagnose MM at the time and blasted the tumour with several high doses of radiotherapy over a six day period (A double dose on the Saturday, Sunday to rest and then single high doses Monday to Friday inclusive).

It did the job.. but fried nearly every stem cell in my body in the process.:-0

I hope that your pain relief regimen stands you in good stead until April 11th… hang on in there and let loose on here if it starts to get bad.:-D

Dai.

[brochoParticipant]

Hi Tina we are in a similiar position I also have a tumour on my spine which is very close to causing spinal compression Because I have already had radiotherapy on that site I was only able to have one dose this time . So back on Dex and hoping it keeps it at bay Hope the pain gets sorted soon, make sure they know how bad it is love Bridget x

[TinaPParticipant]

Hi Bridget,

I have got good pain relief. Co-codamol 30/500 also oramorph to top up.
So far I can only stand for a short while, but the pain subsides when I sit.I have a mobility scooter to use when shopping.

Take care

Tina

[TinaPParticipant]

Yet another delay. Haematologist rang this morning to delay my appointment by another week! The clinical trials nurse is on holiday. I just want to get on with it.
Tina

[PerkymiteParticipant]

Chin up Tina and keep smiling you will get there 😀 😀

Kindeset regards – Vasbyte

David

[tomParticipant]

Aww Bless Tina I know how you feel, I was like that when I was missed (forgot about) for my stem cell transplant they sent some one else instead it put me back by 5 weeks 🙁 I wasn't Happy, but as David say's it all worked out in the end 😎

Love
Tom "Onwards and Upwards" xxx

[TinaPParticipant]

Hi,

To quote Victor Meldrew – I don't believe it – been postponed again till 20th April! I know its only 2 days, but I feel the goal posts are moving all the time.
Sorry to moan – just want to get started and feel I'm fighting back.

Tina

[DaiCroParticipant]

Hi Tina,

What exactly is your treatment plan? Is this your initial frontline treatment and have they mooted radiotherapy for your spine tumour?

Dai.

[TinaPParticipant]

Hi Dai,

I have been offered a place on the Myelom X1 trial. The plan is I go for the intensive pathway. Starting with chemo for 3 cycles, then stem cell harvest. This will be followed be radiotherapy on my spine. Then I will have the SCT.

It all sounds very daunting, and I just want to get on with it. My back is causing me a lot of pain.

Tina

[DaiCroParticipant]

Hi Tina,

I have been there, re: back, spinal tumour, so I have great sympathy… but IMHO the medics have got it right. I had several high doses of radiotherapy a year before I was diagnosed with mm and stlll, a year later my stem cells had not recovered and I struggled to raise 2.1 million cells after 5 intensive, expensively boosted days in harvest. My SCT failed after only 10 months… of which I firmly put the blame on sub-standard, immature stem cells.

So the wait for harvest before radiotherapy makes sense… although I really do appreciate your concern and desperation for relief.:-|

Dai.

[tomParticipant]

Hi Tina
Another Delay :-S well I hope they dont move it again and you soon get the pain relief you deserve 😎
And you know you can moan as often as you want 😀 it lets off a little bit of steam and makes us feel better .

Love Tom "Onwards and Upwards" xxx

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