[CarolsymonsParticipant]

Mavis, I think it is the opposite…the chicken pox virus stays in your system and later presents as shingles. I think that if you have never had chicken pox (like me) you can even catch chicken pox from close contact with someone with shingles.

Carol

[CarolsymonsParticipant]

Hi

Many times people on this and other forums suggest getting another opinion and from what you have written, I think you definitely need to be referred elsewhere. I don’t understand how your dad has new broken bones if he is currently undergoing treatment. As you have seen
there are many treatment options available, with some people being on a third or fourth line of treatment.

Carol

• This reply was modified 10 years, 5 months ago by  Carolsymons.

[CarolsymonsParticipant]

David…what fabulous news!

Carol

[CarolsymonsParticipant]

Hi Jane

This is so sad to read. It is frightening how often I read about the late diagnosis of myeloma. As it is a very rare cancer, GP’s may only see 1 or 2 cases in their lifetime. So often it is only after a trip to emergency with an unexplained fracture or kidney collapse that the diagnosis is made. For myself a blood test in February 2013 from my GP assured me that all was OK with my body, but by the end of March I was in A&E with a pathological fracture of my collarbone which happened as I alighted from the bath. In my case it was lucky that happened as I had an early diagnosis with only 25% cancer cells in my biopsy. But….according to my GP I was perfectly healthy 2 months before,when in reality I already was suffering with cancer. I had no clue either, believing I was perfectly healthy. Mind you my collarbone had been sore for about 3 months but as I had had a fall a few months previously I blamed that for the soreness. I never would have guessed that the myeloma gremlins (as I call them) were busily dissolving my bones! This is a very cruel, incurable cancer and my heart goes out to you and your family for the lack of diagnosis for your ex husband. Luckily I am in remission now, after a stem cell transplant in January, but one is always waiting for the cancer to return, as it will inevitably.

Carol

[CarolsymonsParticipant]

Well said Eve…thinking of you and Slim with your new challenges….sending positive vibes your way.

Carol

[CarolsymonsParticipant]

Hi Nick
I don’t know about your experience, but I never felt unwelcome when I was a newcomer. I am still a relative newbie really, as it is only 14 months since the myeloma gremlins ate my collarbone.

Carol

[CarolsymonsParticipant]

I gave up posting too as the site wouldn’t allow me to sign in, but today hey presto it worked! I am afraid I am forthright too (unfortunately I think it is an Australian trait and often gets me into trouble) like Eve but surely in an open forum it should be for everyone to express their fears, views and thoughts openly. Otherwise why have a forum?

Carol

[CarolsymonsParticipant]

Yeah! Finally the website allowed me to sign in. I gave up trying about 6 weeks ago. Not everyone gets an infection or sepsis. The consultant told me I definitely would as “everyone does” but I didn’t. I did have a temperature spike when my neutrophils were low and they hit me with IV antibiotics which I didn’t want but dared not refuse. After a day of normal temperature they stopped them. I had a bit of nausea and vomiting which they controlled with IV and oral medication, a few days of diarrhoea, an incredibly sore oesophagus which did stop me even drinking for a few days and I couldn’t stand even the smell of food for a few weeks. When I couldn’t swallow they gave me saline and I kept rinsing my dry mouth with iced water. A couple more days after that I just had cold milk but slowly my appetite returned and now 4 1/2 months later, food is my favourite thing! I went back to work on a phased return after 3 months and am now full time. But there are still some days when I need an afternoon siesta, so the fatigue lingers longer. I think SCT is a little like childbirth….it is best if you ignore the horror stories and go through it expecting all will be OK. I know everyone is different and I am lucky as I don’t have any bone pain (well if I am honest my collarbone that the myeloma gremlins ate, occasionally gives me a twinge or 2, but not enough to ever need pain killers) or kidney damage but honestly the CDT made me sicker than the SCT.

I didn’t fuss about hygiene either when I came home, just the usual clean flat and hand washing with soap. I did stay home for the first month, ate whatever I felt like (nothing pleased me for a few weeks) and I have had no infections since the SCT.

Carol

[CarolsymonsParticipant]

Hi Michelle

Are you in the UK? If so, you are lucky to be offered Velcade as a first line treatment. Most of us on the forum could only get CDT (cyclophosphamide, dexamethasone and thalidomide) initially, unless we signed up for a trial. I was also shocked by my diagnosis. Although I was 63 years old, I don’t think anyone my age was fitter or healthier than I was. That is until the myeloma gremlins ate my collarbone! In many ways it was fortunate though, as it gave me an early diagnosis. The treatment is harsh, but unfortunately unavoidable!

Carol

[CarolsymonsParticipant]

Hi

Jump up and down and shout loudly! I am 13 weeks post transplant and your wife’s behaviour is certainly unusual from my experience. You need to check what drugs they are giving her. Every time they brought me tablets or wanted to put medication through the drip, I asked them what they were and why they were giving them to me. There was no real discussion previous to bringing stuff….they seemed to get my blood test results, then the doctors would prescribe more drugs….potassium, blood, platelets, saline, anti nausea drugs, antibiotics (just cos my temperature went to 37 even though I had no infection) etc etc. I had the terribly sore oesophagus and couldn’t eat or drink for a few days and also resorted to cold milk for some time after the pain eased. But…they kept trying to give me oral morphine for the pain, then when I refused they sent in pain specialists who wanted to give me OxyContin I think it was. No thank you! See if you can find out what drugs they are giving your wife because her behaviour is very worrying and far from the norm in my opinion.

Carol

[CarolsymonsParticipant]

Hi Tina

I am 13 weeks post transplant and while feeling better week by week, I am still very tired…..always need my afternoon siesta. Am eating well and walking more each day…went back to work just before the Easter school holidays on a phased return, so slowly life is resuming. I have my biopsy on the 29th of this month at the 100 day mark, but so far all blood tests have me in remission as well…just hope it stays that way. But….everyone is different and I was lucky in that I was diagnosed early without spine or kidney damage. I read of people having had transplants just before me, who are back playing tennis! I am definitely not up to that standard!

Carol

[CarolsymonsParticipant]

Hi

You will find wonderful supportive and knowledgeable people on this forum, so keep posting. I am 13 weeks post transplant and recovering well, having been diagnosed 1 year ago. Have you started treatment yet?

Carol

[CarolsymonsParticipant]

Hi

I think it was the thalidomide that caused me dizziness. Are you asking it about an hour before bedtime?

I asked Occupational Therapy to bring me some equipment, for example a frame around the toilet, which I used to stabilise myself, especially of a night time and a seat over the bath, as very often I was too dizzy to use the shower safely.

At least the drugs are having a positive effect so that is good.

Carol

[CarolsymonsParticipant]

Hi Eve

You are right about me worrying about lack of hair and scars! These things are so minor when I read what others are going through, but I guess the time will come when I have more serious issues to face. Looks like my London flat is sold, so when school finishes on 18 July, I plan to be on the next available plane to Oz. There you will find me on the white sand of Surfer’s Paradise beach, Gold Coast, Queensland….. can hardly wait! It will be winter then, but most days are still around 21 or 22 max so you can still swim (that is if my collarbone allows swimming) I had an X-ray last week so that I can get an opinion about how well it has healed. It is a year now since my collarbone disintegrated…don’t know where the time has gone!

Carol

[CarolsymonsParticipant]

Hi Eve

Yes after the second doctor came in and helped the first trainee doctor to remove it (this was while I was still in hospital after the transplant) they said that the line hadn’t all come out. I don’t understand why, when they had already cut me, they didn’t go back in and remove the cuff before stitching me up. I guess as haematologists they figured they had done their job just by getting it out! It is really annoying to have to go to a surgeon now and have another scar on my chest!

Carol

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