[sb3006Participant]

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[dickbParticipant]

Hi there, nice of you to join us though, like us, I am sure you wish you didn't have to. Unfortunately I am not a medic and did badly at Biology at school so will have to read up on Daz's diagnosis. However, I am sure there is someone on this site who has knowledge of Daz's particular ailments and will be willing to discuss. There are plenty here who can offer advice, help (verbal and maybe some practical depending where you are)and generally support. We've all got stories to tell, some funny, some sad but we are all here together and I hope you find this site helpful, supportive and emlightening. All the best for the future and I am sure we will speak again.

[eveParticipant]

Hi Sallyann

Well I would have to get the computer out for that one.
Plasmacytoma well we all know that's a tumour
Multi centric castle mans disease,new one on me
Absent inferior vena cava vein,new one on me

I cannot help ,but I know a person who can!!! Have you rang Ellen or Maggie from this site!!! Free number top of page,Ellen is lovely,stop frightening yourself on the Internet ,when you start looking at some of those prognoses ,you will think its all over:-P

Please ring Ellen,and welcome to this site,at times I could not have done without it,and the people on it,Eve

[tomParticipant]

Hi Sallyann and Daz

Welcome to the group, and am pleased they eventually found out what was causing Daz's problem even though it took its time.

Try not and search the internet am sure you can get all the info from us mottly mob here ha ha, and you can always phone/email the Nurse.

Good luck in the fight against Myeloma

Love Tom Onwards and upwards x

[CarolsymonsParticipant]

But is Daz's diagnosis actually myeloma with these added complications? It does seem tht the treatment for Castleman's is similar to myeloma with chemotherapy, steroids and thalidomide according to the Internet.

Carol

[sb3006Participant]

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[tomParticipant]

Hi Sallyann

Well you two have been going through it for some time :-S
and yes you can send things on here just click "Attach a file" at the bottom of you reply box then find the file and hey ho its on 😎

Good Luck

Tom Onwards and Upwards x

[sb3006Participant]

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[tomParticipant]

Hi Sallyann

Well am sure you know a problem shared is a problem halved 😀
And you are correct about other peoples problems, I know that I don't have to read much nor look far to see/hear about people that is far far worse than I.
I make the most of my time with family and friends as I am in remission and doing great, am sure Daz will get to this point soon also.

I cant answer your Q am afraid it will vary with when the machine Daz will use has got a spare bit of time, I hope its not long as am told it will help the pain.

Love to you Both
Tom Onwards and Upwards xx

[sb3006Participant]

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[eveParticipant]

Hi Sallyann

May I ask were is that beautiful island!!!!

Are you in the UK.!!!

I do not understand why you have so little information !!!,you should do some research,as you can have a Plasmactoma,,without being full blown MM..
The consultant should have explained everything to you! So what's going on.Eve

[sb3006Participant]

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[eveParticipant]

Hi Sallyann

I thought Slims consultant,lacked empathy to his situation,attitude you have myeloma,do not worry!!!,then you start looking on the net,and frighten your self silly,but what they do not seem to understand,if they give you the facts,with an explanation of them,even if its only in writing.Yes it's a shock ,but you get over shocks,but no explanation,you keep looking.!!:-P

I would ring Ellen or Maggie today,explain what you know,as you seem to have little information on here,they can help you,even if its just a list of questions to ask your consultant,you can always find his e mail address and e mail the questions ,so he has the answers when you go in.!!

Try to take it one day at a time,prepare yourself ,by writing questions down,ask for copy of any test done,like MRI scan bloods,you might not understand them now,but these days you can google any thing. Or better still ask Ellen free number at top of page,she is very nice,she is in a room by herself,so you can hear very clearly,plus she is use to people getting,upset or worried. And she will tell you the facts,she will even e mail you information.Love Eve

[tomParticipant]

Hi Sallyann

Well I have never had Pain ?? I get a bad back and a sore shoulder but that is put down to wear and tear as I have had all the scans and X ray stuff done 😀

I went into remission prior to SCT whilst being on CTD (my first line of treatment)
No Staging with me I had a lump on rib cage and after telling two DSr's its neither a pulled Muscle or a bruised rib it was Xray's then withing about four weeks I was seen by my Consultant and he told me on the 2nd visit I had MM 🙁
Never needed RT during any of the treatment, and after SCT in 2009 when I done two years on Zometa I was then drug free so its a yes get out and enjoy yourself, just a wait and see how long this SCT lasts really.

Hope the Above helps???

Love Tom Onwards and upwards xx

[mhnevillParticipant]

Hi Sallyann

When I was diagnosed with a plasmacytoma, I also had no clue what I was dealing with. I think there is a Leaflet on the Site about them, but before I knew about MUK I track
Led the Internet frantically like you.

Plasmatomas are cellular masses formed by rogue cells. They either form as lumps in the tissues, (sounds like what Daz has. Is it around his throat/shoulder area?). They can also form around bones. In my case it formed around one of my vertebrae and caused restriction of the spinal cord. This meant I temporarily lost all mobility. I had to have an operation to remove the growth and had 10 fractions (sessions) of radiotherapy as soon as my back had healed. This was three months after original diagnosis. Diagnose of Myeloma followed diagnosis of plasmacytoma by about a month (following a bone marrow biopsy.)

Which hospital is Daz under? Can he change. Someone on here is under Hull and I think they find it OK.

This isn't a death knell, so keep strong for one another.

Love Mavis x

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