[CarolsymonsParticipant]

Hi Eve

So sad about Slim and I repeat you are an amazing woman the way you carried out Slim’s wishes-no doubt at great cost to your own health. I am finally returning to Australia even though I still have no contract for this London flat after more than 5 months! I cannot sit here any longer when all I want is to be back with my family.

I do hope you have the strength to stay on this forum because you have been such a support for so many people. Let me know if in the future your adventures take you to Australia.

Carol

[CarolsymonsParticipant]

Hi Michelle and Finn

I finally got to see a haemotology consultant at the hospital (last time the GP could only do a phone consultation and prescribed a decongestant!) However despite no temperature the consultant has prescribed me 2 more antibiotics for 10 days! At first I wasn’t going to take them, but thank you Finn for your reply, as you have convinced me to take them. I am really concerned about this cough as I am returning to Australia in a couple of weeks and I am sure the stale air in the plane for 24 hours will not help the situation!

And can you believe it after more than 5 months after an offer on my flat was made, I still have no contract! I will just have to negotiate a sale from Australia as I cannot waste any more time of my already shortened life, sitting alone in London away from my family.

Carol

[CarolsymonsParticipant]

Hi Rebecca

I have been told to take those prophylactic antibiotics for 12 months. Septrim is to prevent pneumonia apparently. Last blood test 2 weeks ago my neutrophils were 1.6. Not sure if they were affected by the cough I am still battling.

Carol

[CarolsymonsParticipant]

Hi Rebecca
I too have a head of curls…yuk! I posted elsewhere that someone told me I looked like a golliwog, but I felt like an old lady with a perm as my hair is silvery grey. But I have just been to the hairdressers who has cut it short at the back and sides so at least it looks like it now has a bit of style. But I agree with you I HATE curls!

Carol

[CarolsymonsParticipant]

Hi Michelle

I knew that pneumonia was a risk and am taking my prophylactic penicillin and septrim reluctantly but religiously. The thing is I don’t have a temperature, so it can’t be a bacterial infection. If it were a virus you would think 6 weeks is long enough to beat it. My blood counts were OK 2 weeks ago, so I am not neutropenic. I am so sick of coughing, but the GP seems less than interested in my health I am afraid! My daughter is a pharmacist and wondered if I needed inhaled steroids to reduce the inflammation, so that is the next thing I will raise with the doctor, if the decongestant doesn’t help. I feel like I have to be my own GP!

Carol

[CarolsymonsParticipant]

Well strangely it seems like I am the only patient to suffer lung problems adter SCT! Still no X-ray results despite my asking the surgery to fax the hospital urgently, but today have now been prescribed a decongestant! We will see what that does!

Carol

[CarolsymonsParticipant]

Hi Julie
I had an awful metallic taste while on CDT and was really fussy about what I felt like eating…nothing tasted right. I don’t remember a dry mouth then, although I do have that now after SCT. It is a problem as lack of saliva may lead to increased tooth decay….something I don’t want to face as well as everything else. Maybe your dry mouth is from the anti sickness drug?

Carol

[CarolsymonsParticipant]

Hi Frances
I developed double vision and black floaters in one eye when on CDT. The double vision has improved but the black floaters are annoying. Somewhere I read that cataracts are also a side effect and I have them too, but they may have been from the Australian sun before I was dxd. Who knows?

Carol

[CarolsymonsParticipant]

Hi John

It seems that treatment in the UK is dependent on age and physical fitness. Usually the doctors don’t offer stem cell transplant over 65 years of age but there are older patients on this forum who were offered it and got through the process. I always ask for a printout of my blood tests so that I can track my paraprotein (iga) and also my heavy/light chain ratio as I have iga lambda myeloma. It is difficult for doctors to forecast prognosis as this disease is so individual. Are you working with a myeloma specialist? If not then ask to be referred to one. My consultants at Ealing and Hammersmith Hospitals laid out a possible path when I was diagnosed and luckily all has gone smoothly. I am now in complete remission 7 months after stem cell transplant (SCT) If your dad has fractured vertebrae I know some people here have had kyloplasty which has provided relief from pain and had them walking again. I was fortunate in that only my collarbone was eaten by the myeloma gremlins, not my spine. Keep asking questions and if you don’t get answers ask to be referred elsewhere.

Carol

[CarolsymonsParticipant]

Hi Helen
Thalidomide made me dopey and dizzy if I got up through the night and also caused neuropathy in my toes. I was on warfarin as blood clots can be a side effect of thalidomide. Was your uncle on any sort of blood thinners? Is he taking other meds as well? The initial therapy I was given was cyclophosphamide, dexamethasone and thalidomide (CDT) and I was quite ill from the drugs by the end of the 6th cycle.

Carol

[CarolsymonsParticipant]

Hi

Everyone is different but I delayed starting treatment for a month so that I could have a holiday. I don’t think it made any difference. As experienced people here keep saying battling this disease is a marathon not a sprint. Having said that I know when I finished my 6 cycles of initial therapy (CDT) it took more than a month before I felt somewhere near normal again.

Carol

[CarolsymonsParticipant]

Hi Eve

Can you believe it? Work finished last Friday, consultant appointment today, I am ready and raring to go to Oz except for 1 huge problem….no bloody contract for the sale of this flat. Almost 5 months now and I am in limbo. Cannot resign my job, cannot book my one way ticket out of London so here I sit, waiting waiting…..I don’t want to be critical as I am a foreigner here, but the real estate system in this country is ridiculous! In Australia you have a 10% deposit on day 1 with a 28 day contract usually and it us all done and dusted. So far I have missed my eldest grand daughter’s birthday last Monday, mum’s 86th birthday yesterday and at this rate I will even miss the youngest grand daughter’s 1st birthday on 9 August….remember I haven’t even seen this little one yet due to stupid myeloma! NOT HAPPY! Going to Bosnia on Saturday to see my husband and to sulk over there for a week…too depressing sitting here alone.

Carol

[CarolsymonsParticipant]

Hi Sarah

I am 6 months post SCT and in complete remission. The best advice I can give you is don’t read the horror stories and encourage mum go into the process truly believing it will work and all will be well. Maybe I was lucky, but I was out in 2 weeks and had no infections. Yes I had the terribly painful oesophagus, nausea, vomiting and diarrhoea but it passes and just like childbirth, you forget the worst bits. I am one of the patients who found the side effects from the initial treatment with the CDT worse than the transplant!

Carol

[CarolsymonsParticipant]

Hi Judy and Wendy

I have iga lambda light chain myeloma and just today have received another set of good blood results, still staying in stringent complete remission 6 months after my SCT. My initial therapy was 6 cycles of CDT which while that obliterated all of my paraprotein didn’t manage to get the lambda light chains down to normal. However, after being blitzed with the etoposide before stem cell collection and of course the deadly melphalan before the transplant, my light chain ratio has been normal ever since. Fingers crossed it stays that way now for a long time. The sweetest words I have heard for a long time came from my consultant today saying next appointment in 3 months! Hallelujah! 3 months……excited much! So excited that I zipped into central London and spent an hilarious few hours watching “Dirty Rotten Scoundrels” at the Savoy Theatre….great show!

Carol

[CarolsymonsParticipant]

Hi David

It is just so reassuring to read positive stories like yours. I am doing well, 6 months post transplant and in complete remission. Long may it last!

Carol

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