[susieParticipant]

I saw my consultant today and yes it has progressed. I have a diagnosis of myeloma and a myeloma tumour on my spine. I’m to start treatment and I’m scared. I’ve been offered the Myeloma x1 trial. I’m just trying to get my head round it all.
How do you all cope with this. All the time I was monitored for MGUS, I never thought it would become active myeloma. Sorry to sound such a wimp when there are so many brave people on here.
susie

[mhnevillParticipant]

Hi Susie

So sorry to hear you have progressed to full blown MM. Although you must have known it was a possibility it doesn’t stop it been a body blow.

Sorry to hear you have a plasmacytoma on your spine. How are they going to treat it? Are you to have an operation? I had a plasmacytoma removed from my spine four years ago. It was then I was diagnosed with MM. My operation was followed up by radiotherapy. I think some people are treated just by radiotherapy if the plasmacytoma isn’t wrapped round around a vertebra.

I have had 6 lots of CDT and am now in complete remission. One thing about being on a Trial is that you will be very closely monitored and on the forefront of treatment options.

Very best wishes.

Mavis

[susieParticipant]

Thanks so much for your replies. It really helps to know there are people out there who know how a person feels in these circumstances.
My consultant has just phoned me. Apparently they are more concerned about the tumour on my sacral spine. He said it is rather large, the size of a tangerine, and it was missed by the physio team that took the MRI. Good eh. I’ve got to see him on Tuesday and he want me to have a CT and more Xrays. I must say I do feel he’s on the ball.
Mavis,
You said you had a Plasmacytoma on your spine. May I ask where abouts it was on the spine ? There has been no mention of surgery or radiotherapy to me.
Best wishes to all
Susie

[mhnevillParticipant]

Hi Susie,

I can see that the site of your plasmacytoma is very differently sited than mine. Mine was golf ball size and wrapped round one of my vertebrae, can’t remember if it was T10 or T12. The thing was it was also around the spinal cord so it was very dangerous when they removed it. However, I had a brilliant surgeon at a Leeds LGI and the op was very successful.

I remember having. cT scan so they could find out more about what they were dealing with.

I’m glad you’ve got confidence in your Consulatant as that relationship is so vital. Although I rarely get to see the a Consultant these days, I am very fortunate with the team at Bradford RI.

All best wishes for your future treatment plan. Do keep us informed so we can root for you!.

Mavis

[susieParticipant]

Hi. I had my CT and skeletal survey and apart from a few very minor lesions he said nothing to worry about. So its only the Plasmacytoma to worry about. My consultant showed me the scan, the tumour is really big, no wonder I’ve had pain. I start treatment next week on the Myeloma 11 trial, they have also offered the TEAM trial that runs along side it, but I haven’t decided on that yet. Antibiotics for 12 weeks against a placebo, don’t know I’m keen on that, I’ll give it thought.

Best wishes to all

Susie

[mhnevillParticipant]

Hi Susie

It may be worth taking part in the antibiotic trial. If you did get the antibiotic it could stop you getting shingles or other complications of being on chemotherapy.

Best wishes, whatever you decide.

Mavis

[susieParticipant]

Hi Mavis,
I have decided not to do the antibiotic trial. I researched the drug and the side effects/interactions are beyond belief. I know its probable I wouldn’t get them, but the risk is there and I don’t want that risk. I’ll have side effects of my treatment to contend with which is enough.
Bye the way, they wouldn’t stop shingles coz that’s caused by a virus and anti b’s don’t have an effect on viruses. Thank you for your advise tho.
Best wishes to all
Susie

[docmikeParticipant]

Hi Susie,
I am sorry to hear your news but I am not surprised after reading your posts on kp’s thread ;(?NEW)vertebral fracture amd m spike>30 is highly suggestive of mm.not mgus or smoldering .I also should confirm that physios may order mri s but a radiologist is professionally responsible for the primary reporting of the mri and generates the written or electronic report without exception .
As it happens my m spike is now 30 so the next blood test in october may be critical .My heamotologist has already mentioned prophylactic iv bisphosphonates .So i may join you on treatment very shortly after 6 yrs of smouldering (and reviewing all the literature on smouldering on the way ).
Best wishes mike

[kpParticipant]

Hi Susie,

I haven’t been on for a while, it looks like I too will be joining the ranks of MM on treatment shortly as all the numbers going (quite quickly) upwards.  Now on six weekly monitoring and feeling a little sorry for myself, so like a little turtle popped my head back into my shell.

I can understand why you would not wish to join the trial, sometimes the side effects for treatments are quite scary but isn’t the news in the Myeloma UK newsletter heartening.

Wishing you all the best, and hope you stay as well as possible through your treatment programme.

Sorry to hear your news Mike, fingers crossed for your October blood test result

Very best wishes

Karen

[susieParticipant]

Hi Mike

Thank you for your reply. My MRI had been reported on by a Neuroradiologist saying I had a herniated disc, several compressed discs, and an L1 compression fracture, but from the sacral bones down, “all was normal”. That gives a person confidence when a few weeks later my haemo consultant tells me I have a Plasmacytoma the size of a tangerine on the sacrum. My paraprotein is now 56, Plasma cells 10-15%, so I am now officially myeloma. I have agreed to do the Myeloma X1 trial, but have decided against doing the TEAMM trial which is levofloxacin. I’m also having Fragmin, but I am a bit puzzled why there has been no mention of me having bisphosphonates.

I do hope October brings you better new and you are able to stay away from treatment a bit longer.

Very best wishes

Susie

[susieParticipant]

Hi Karen

I’m sorry to hear the problems you are having getting a diagnosis. Its so worrying I know.

What is your paraprotein and have they done a bone marrow. All I can say is what was told to me and that is, if the cytoma wasn’t there I too would be a watch and wait but shorter monitoring periods.
Where did you get your second opinion done.

All the best, I shall be thinking of you.

Susie

[docmikeParticipant]

Dear Susie
I think myeloma x1 has zometa/zolendric acid iv/bisphosphonate within its protocol .You may wish to look on this website about the treatment of plasmacytoma and in the relevant discussion forum .
Dear Karen ,Likewise i suspected that you have entered the grey zone(sm or mm?) like me . your title confusing journey thread reflects the gaps in our knowledge in this grey zone .
Mike

[susieParticipant]

Hi
Well I went for my last pre drugs consult and to collect the drugs as well as having the CNS explain everything. I can’t remember half of what she said and am totally gobsmacked by the drugs they have given me. How people get their heads round it I don’t know, I’m still trying to put together some sort of chart so I know what to take and when.
I’m on the RCD myeloma 11 trial so I expected to get the 3 drugs plus perhaps an anti-emetic. But I’ve also been given Aciclovir, Allopurinol, and Co-trimoxazole (which if I remember, I can’t tolerate). Plus the Fragmin injections.
Has anyone else had these other drugs ?
I am just so overwhelmed by all this. I live on my own, so I hope you don’t mind my venting my anguish on you lovely folks.
Susie

[andygParticipant]

Hi Susie.
I was on RCD for 22 cycles and the main problems I had were being neutropenic most of the time ie neutrophils below 1.0 my other bloods weren’t too good either and nausea for a couple of days after taking the cyclophosphamide. Aciclovir, which I also took and still do is an anti viral and allopurinol which I didn’t take is for prevention of gout.
It’s hard to grasp when you start but you’ll be soon watching Holby and recognising the drugs used and what they’re for.

Every day is a gift
Use it.

Andy x

[susieParticipant]

Hi Gary

Thanks for your reply. It quite cheered me up.
I started my treatment this morning. I think I’ve taken 26 tablets, I’m puzzled why the tablets are so small strength, meaning I took 10 Dex (2mg) and 10 cyclo (50mg), weird. at least tomorrow I don’t take the cyclophosphamide. I’ve carried on as normal plus drinking like a fish, washing hands +++ etc. I have felt rather woozy this afternoon but I suppose thats normal after such a concoction of drugs.
Well as Tom always says “onwards and upwards”
Love to all
Susie

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