[AliParticipant]

Hi everyone. Sorry I only seem to come here when I want something(like one of the kids!). My Mum has been in hospital with an infection and during a scan to try and find the cause of the infection they have come accross what they think is a plasmacytoma. Does anyone have any info or personal dealings with one of these buggers? Mums been in remission since 2012 following sct.

Thankyou in advance

Ali x

[stanley-1960Participant]

Ali,

I have just had it confirmed i have a plastacytoma of the fifth rib. I am on the start of my journey and have given a brief history of my story so far in the newcomers section. I will update progress as soon as i start my treatment which will be  hopefully today or tuesday at the latest. I’m very sorry to here about your mum and hope she gets treatment asap.

Best regards,

Stanley

[HelenParticipant]

Hi Ali
I think its good to just pop in now and then, it means you are finding other things to do! Like holidaying with your lovely boys!

Plasmacytoma might mean increased myeloma activity in one of the bones….worth asking if this lesion is new or was present before on previous bone scans and has changed. Either way your mum should be on close watch again.
Love Helen

[AliParticipant]

Hi Stanley, nice to meet you:-) better under different circumstances, but here we are! Good lu
ck with your treatment. Please keep us informed. Did it start yesterday?

Hi Helen, thanks for your reply. Mums to have full body xray, its been 2 years sinc e the last one. Her consultant is on annual leave, which is typical. This was an incidental finding, they did a ct.scan to try and find out what was causing the infection ( they thought it was appenicitis, and was nearly down to theater) just as my rollercoaster had eased off abit!

How are you doing? Back to work? Ooo and how’s the wedding plans going?

Love Ali x

[eveParticipant]

Hi Ali

As Helen says ,it’s good that life has been normal for sometime and the Myeloma locked away!!

They usually pick up the Myeloma in the bloods,so the cat scan could be old damage,did mum have damage in the same area last time!!
If it is a new Plasmacytoma it can be dealt with on Chemo,Slims old damage and new damage showed on a MRI Scan,so try not to think the worst,and I know how hard that is.

Ali just remember ,that lots of people on here know how you feel,as we have been there and understand . Love Eve

[stanley-1960Participant]

Ali,

Many thanks  for the kind comments, i afraid i am waiting till Tuesday at the earliest for the start later if its trial 3 with a drip. I hope you mum’s survey is done asap and she gets seen promptly. I have started to give this disease greater thought with regards to others closest to me especially my wife and the burden i may be to her. I have started to read previous posts and hope to draw on past experiences of others to assist.

kindest regards,

Stanley

[AliParticipant]

Hi Eve
Thanks for your reply, Mum reminded me she had an xray in January and no sign of this mass?! Then. Been told that bloods were fine all the time. We don’t ask about pps ss we got abit obsessed. I will remain positive as I

,
ts the only way to be. In hopes I can shove the Myeloma back in its box!

Stanley, read up all you can, know your enemy. Your family will be sad and worried for sure, but I am sure you won’t be a burden to them. Let them help you.

I’m doing this on my fone and its proving tricky!

Will catch up in the week

Love Ali x

[HelenParticipant]

Hi Ali
I’m sorry, was I too blunt with my post? Rereading it it seems very bald, though I’m not sure how else to say it! It still might be nothing but needs checking out thoroughly. It’s good that you’ve not been driven by the numbers too, I’ve not asked for mine for a while, I’m just enjoying life between appointments.
You will be happy to hear that I’m taking the bull by the horns and retiring in September, though heaven knows what I’m going to do all day. I hate housework! Maybe I will make bespoke knitwear!
Love Helen

[AliParticipant]

Hi Helen, no, you weren’t too blunt! I always take your comments on board, and value your opinion. Just hope it doesn’t take long to sort a biopsy out. I hate the waiting game 🙁

Retirement! Good for you! You will not know how you found the time to go to work. I bet there is a market for your knitwear, family orders will keep you busy for a while.

Love Ali xx

[mhnevillParticipant]

Hi Ali

I has plasmacytoma wrapped round my spinal cord so had to have surgery four years ago. plasmacytomas in soft tissue seem to be dealt with by radiotherapy.

I like to have my blood results every four weeks when I go for Zometa infusion. I am always frustrated that they do not do PP test routinely. I am keeping a close eye on my kidney readings because I have been using anti inflamatories. We are all different.

Best wishes for the future,

Mavis

Hi Helen

So pleased to hear you have bitten the bullet and taken retirement. I am sure you won’t regret it.

Regards.

Mavis

[AliParticipant]

Hi Mavis,

Thankyou for your reply. Did you have the plasmacytoma before or after your MM diagnosis? Did you have to have radiotherapy after surgery?

Mum is still waiting for
further investigations, its frustrating that the medics don’t consider it as urgent as we do, and the
bank holiday weekend doesn’t help! Still, mums got a stinking cold and I don’t suppose they will want to be doing biopsies until she is clear.

Yes Mavis, keep an eye on your readings, take care x

Hope everyone has an eggstraspecial Easter weekend.

[SalParticipant]

Hi Ali,

My husband had a plasmacytoma last year on his C6/C7 vertebrae. It caused the vertebrae to collapse and compressed his spinal cord. Surgery was the first step (twice – front and back), to stabilise the spine. The surgeon said he “scooped out lots of gunk” but at the time we didn’t know what it was. He was even referred to a tropical disease consultant because there was a suggestion that it was TB of the spine. It took two biopsies before the plasmacytoma was diagnosed, and the next step, 3 months after the second operation, was radiotherapy 5 days a week for five weeks. At that stage the PP levels and bone marrow biopsy didn’t indicate myeloma. He didn’t start chemo until January this year, when the PP had gone up, a PET scan showed myeloma activity and a second bone marrow biopsy  confirmed progression to myeloma.

Looking at other people’s comments, this all suggests to me that treatment of plasmacytoma, like so much to do with myeloma, varies according to the individual concerned. I don’t know if it reassures you, but my husband had had considerable pain in his back and neck for 6-7 months before he was referred for an MRI, so the damage was done over time rather than suddenly.

I hope you can get some answers very soon. It’s easier when you know what you’re dealing with, I think.

Sarah

[HelenParticipant]

Hi Ali
That’s all right then! I’m afraid that I’ve become a lot more ‘blunt’ recently …. I used to be fairly tactless, but now it’s total!…… I blame the disease!! Has your mum heard anything yet?

Hi Mavis good to see you are still in remission. I only just requested early retirement, it hasn’t happened yet, I’m hoping to go another few months yet but got to see what occ health say, no doubt these things will take some time.
Love Helen

[AliParticipant]

Hi Sarah, thankyou for that. Your poor hubby, sounds awful :-(. How is he doing now?

Hey Helen, no, not heard a thing. Nothing has been done at all, no further investigation, no xrays. Probably to do with the bank holiday. She goes to see haematology consultant on Thursday so we should find out then what has been tarranged.Could I borrow some of your bluntness? Could do with just a tad! I think its a natural occurance, the older one gets you are allowed to say what y,
Ou think,its the law hehe.

Right, better get up and at it,

Love Ali x

[bandityogaParticipant]

Hi Helen

Enjoy your retirement. I was wary of retiring but now I don’t know how I fitted work in. An hour extra in bed, and taking it easy. Out for coffees, massage and breaks away. I also do pilates and sing in Rock Choir.

Ian finished first cycle of 6. Results on 28 th. Fingers crossed it’s working. Off for a few days tomorrow to Darlington , only place we could get hotel we could get with wet room.

Enjoy

Maureen x

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