[SharonGParticipant]

Hi Bridget
The radiotherapy hasn't been too bad at all! I had to go back under the ct scanner to be measured and now sport some lovely free tattooes so they know they are zapping me in the right place. I am only having 5 sessions for this tumour and i am only under the radiotherapy machine for a couple of minutes while they actually do it now. Still have to discuss if i need valcade or not, i'm not sure i like the idea of lots of little tumours sitting there waiting to pop up though!
They do say that the pain will get worse before it gets better and will be a few weeks before i start to see the benefits. I've really had to push for this and was admitted because i couldn't cope with the pain any more, so you must push them Bridget if you feel they are not doing things quickly. I have also been introduced to the palliative care team for pain control, but thats very difficult for me as thats what i used to do for a living!lol!
Take care
Love Sharon x

[SharonGParticipant]

Hi Kieth
Sorry to hear about your relapse, I am in the same boat myself having just had the tumour at the bottom of my spine confirmed as a plasmacytoma and evidence of speckles of small plasmacytomas up my spine :'-( like you I am gutted. I am in hospital having radiotherapy at the moment and am waiting to see whether my consultant thinks I should go for valcade to try to knock all the other smaller tumours on the head now.
I haven't given up yet, I know there are still plenty more treatments available and I intend to try them all if necessary!
Wishing you luck
Sharon x

[SharonGParticipant]

Good for you Min, I really hope you get it! My husband and I are coming to the realization that I will probably not get back to work, but at 40 things are a bit different for me! At least the insurance paid off the mortgage which has been a weight off our minds!
Love Sharon

[SharonGParticipant]

Will be thinking of you tomorrow Roz and your family. I hope the day goes as you would want it to for Michael.
Sending you hugs

love Sharon x

[SharonGParticipant]

Lol sorry gill, like shirley I was quite proud of my dark (would have been very curly if I didn't straighten them!) locks, hence the pre-transplant photo. Fortunately for me they have grown back lovely and its time I found a new photo of me! I have always said I will resort to dyeing it if it starts to go grey! Hopefully at 40 I have got a few years yet to go- if this dreadful illness doesn't get me first!

I hope I didn't offend you too much
love Sharon x

[SharonGParticipant]

Hi Shirley
so glad to hear that you are doing well! As I am sure you will remember how quick your hair grows back once it starts and may be it will grow back different this time, I just remember praying it didn't grow back grey!
Wishing you luck and all the best for the new year!
Love Sharon x

[SharonGParticipant]

Hi Keith

It sounds just like the pain I had when I was diagnosed. One day it would be the left side of my chest, the next day the right side! It puzzled all the doctors until somebody did my paraprotien levels!

Sorry, as it does sound like it could be on its way back again. Take the sedation if they offer you some for the bmb!

Love Sharon x

[SharonGParticipant]

Dear Roz

I am so sorry to hear your news, but I agree with the others in that Michael is now at peace and that you will always have treasured memories of him. Try to think of him how he was before this dreadful illness took hold.

Love Sharon x

[SharonGParticipant]

Dear Roz

you have had such a tough time and you should have no reason to feel guilty. You have been with Michael as much as you can, it is not going to help him if you make yourself ill by being there.
As a nurse who has worked in the local hospice for 10 years, I have seen relatives like you sit for many days and nights at their loved ones bedside, they may just even have gone to the toilet when it happens. Sometimes its as if they wait for their loved ones to go before they move on. I think it must be because they can't face leaving this world and leaving their loved ones. I hope you understand what I am trying to say Roz.
If he is pain free and peaceful, then he is being well looked after and you should not worry yourself Roz. You have been so strong, it is especially difficult at this time of year.
Thinking of you

Sharon x

[SharonGParticipant]

Hi Shirley

I'm glad everything is looking positive at the moment. I hope they get enough cells from your sister at the next attempt and that your appetite improves enough so you can enjoy some Christmas dinner ( although my thoughts on hospital food is it leaves a lot to be desired and no wonder none of us have any appetite while we are in!)

Wishing you all the best
Love Sharon x

[SharonGParticipant]

The last 18 months since my diagnosis have definately been a roller coaster ride, one which I would preferably rather not be on! However, here we all are, so I would like to thank you all for your support, even if its just been that by reading your posts it makes me feel like I am not alone.
So I wish you all a merry Christmas and all the best for 2011.

Love Sharon x

[SharonGParticipant]

Hi Katie
My bloods have remained fine with both my para-protiens and light chains undetectable. I think this is why my consultant wants a biopsy. I had total body irradiation as part of my conditioning treatment for my allo and that has about a 5% risk of developing a secondary cancer. I wasn't brave enough to ask what else it might be if not a plasmacytoma, a question for Friday at the clinic appointment I have.

I also have had GvHD and spent 7 months on prednisolone and still have aching joints which my consultant thinks is GvHD. So when I asked about LDI he felt this was not an option as would increase the GvHD. I really hope it is an isolated lump and radiotherapy will knock it into touch.
Thank you so much for your reply, you have given me some hope. I hope the revlimid works as well as it should and quickly too

Love Sharon x

[SharonGParticipant]

Thanks Gaye, it is as Bridget says a bummer! (in more sense than one as that is where this plasmacytoma is!) But I have 2 kids so Christmas will be as normal as possible for them.
I have the opposite problem to you in that my head is full of holes! Well my skull is full of lytic lesions so my skull x-ray looks like a holey mess- as my husband says I literally have a head like a sieve :-S !
Have a good Christmas and all the best for the new year
Love Sharon x

[SharonGParticipant]

Thank you all for your responses. Just knowing that somebody out there understands how I feel helps.
Katie, its interesting to hear that you also developed a lump after 18 months, although I am sorry you relapsed so soon. My consultant says if it is a plasmacytoma he will scan me for any further lumps or bumps! Unfortunately I have also had a slight pain in my shoulder so it is possible I will have to start systemic treatment again, he says he recommends velcade as it has a really good response to patients who have had allo's.
Love Sharon x

[SharonGParticipant]

Hi Bridget

I am so sorry to hear that the velcade has not worked. I wish you better luck with the revlimid and for 2011.

Love Sharon x

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