[SharonGParticipant]

Hi all
I'm generally not one for posting but I know there are a few of you out there that have had allo sct's. I had mine in February this year, I developed pain in my hip and left leg at the beginning of the month, x-rays were clear, but an MRI shows I have a 2 x 4cm tumour on my sacral area of the spine. My consultant was surprised as my bloods and everything have been fine and my 3 month post sct showed 100% donor cells and a complete response to the transplant. I am due to have it biopsied on 30th Dec to confirm it is a plasmacytoma.
Naturally we are devastated that if it has returned already what lies ahead 🙁 . We hoped for a much longer remission following the allo.
Has anybody had anything similar

Love Sharon x

[PerkymiteParticipant]

Hi Sharon, I was shocked to read your story. I thought an ALLO was the Gold Standard. I can offer nothing but my sympathy and hope that it is just a blip in a good recovery.
Kindest regards
David

[GillParticipant]

Hi Sharon
Fingers crossed that it is a blip as David puts it. We were told recently by Stephen's specialist that allos are being used more and more here in England (following the USA I think)as the drugs for GVHD are so much better now

I hope that there is someone on here that has experience of an allo and can give you some information

Good luck Gill

[SharonGParticipant]

Thanks guys, yes we also thought that it was going to give me a long remission. I have had some complications with GvHD but I thought this was a good thing as it would also create the graft versus myeloma effect as well. We are hoping it is just a solitary tumour and radiotherapy will sort it, but my consultant wants me to have a biopsy just to confirm it is the myeloma, which I have to have to have done under general anaesthetic with the ct scanner! I think it scares me more if its something else!

Love Sharon x

[MariParticipant]

Dear Sharon,

Sorry to hear your news, it must be a shock after hearing that all was going so well. I do hope they can get to the bottom of it and sort something out for you soon,

Love Mari xx

[KatieParticipant]

Hi Sharon,

Sorry to hear your news. Eighteen months after my allo, I developed a lump as well. I believe it's not uncommon.

Hopefully a shot of radiotherapy will sort it out and click your immune system back into gear.

Unfortunately I fully relapsed about six months later but many people don't.

Good luck

[brochoParticipant]

Hi Sharon this illness is a real bummer sometimes .I have everything crossed for you to get good news on the 30th love Bridget 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

[GayeParticipant]

Sharon – I do agree with Bridget about your news being a complete bummer but whatever your consultant feels about future treatment, I know he will have your very best interest at heart. We will be here supporting you.

My plasmacytomas grow on my head so I always know when activity is increasing before the docs do!

Do have an enjoyable and peaceful Christmas.
Love, Gaye 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

[GayeParticipant]

Dear Sharon – this is why myeloma and where it breaks out never ceases to amaze me. Yes, it truly is a bummer in every sense of the word. I know what you mean about the children and it being their time. So, I have hope are not getting too much discomfort from your plasmacytoma and enjoy your Christmas.
Love, Gaye x

[KatieParticipant]

Hi Sharon,

My allo was my second transplant so I have started Revlimid as a third line treatment.

They found my plasmocytoma through the increase in light chain count but it was pretty moderate. I believe it went up in 2's and 3's. Have you counts risen at all?

I had a CT/Pet scan which identified the lump on my rib but as it was the only one, they wanted to do some radiotherapy quickly to eradicate it. Unfortunately i have suffered from GvHD in my lungs and they were considered too vulnerable for the rt so i was put on low dose thalidomide instead. Like you, my chimerism was 100% donor and the GvHD was there but sadly it just didnt last long enough. About six months later, i found a lump on my head and the light chains jumped up.

There are some other treatment options such as LDI (Lymphocyte Donor Infusion)I think, a top up of stem cells. Might be worth asking about..

However, i have read a couple of blogs from America where patients have a couple of plasmocytomas but havent fully relapsed so please dont give up hope. Pray for an isolated lump that can be zapped if anything. What are the other options if it "something" else? Better or worse?

Let Christmas take your mind off it for now and be cheered up by your children.

lots of love

[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

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