[CarolsymonsParticipant]

Hi John
Best of luck with the transplant. Rebecca is right about your wife finding it difficult. I had such good care from the staff at Hammersmith Hospital that I only asked my husband to come to visit every 2 or 3 days. It upset him to see me ill and I found it easier to manage the few days of nausea etc without having to worry about him as well! But everyone is different I guess and you may need your wife there for support.

Carol

[CarolsymonsParticipant]

Hi Rebecca
I don’t understand why I didn’t lose all my hair with the melphalan….it seems everyone else does. I could have just kept what I had left! Maybe I should shave off the stubble to encourage new growth? Maybe the stubble is so damaged from the melphalan it can’t grow? I am starting to get worried…I don’t want to be hairless forever!
I do have a wig that is also quite like my old hair but it annoys me so I only wear it when I go out. At home I just wear a turban or scarf.

Carol

[CarolsymonsParticipant]

Hi Dick

Don’t lose hope yet from the transplant. I have read of people on this forum whose pp continued to drop many months after the transplant. As Eve says you have youth and fitness on your side. Remember you are only a few months post transplant so REST! I have an offer on this London flat so am planning my escape to Australia, but everything seems to still be such an effort, even though I am 2 months post transplant now. People say I look well and supposedly the cancer is gone for now, but I am still so tired and feel “spaced out” most of the time. I have to return to work next week (I can’t believe it is 1 year since my collarbone disintegrated) so I need to get myself together before then. Luckily I only have to do 1 hour a day for the first week and we have 2 weeks Easter holidays from the 4 April….joys of working in a school!

Carol

[CarolsymonsParticipant]

Hi Dick

I was wondering why they sent you to SCT with a paraprotein of 32? Did you have Velcade for first line of treatment or CDT?

Carol

[CarolsymonsParticipant]

Hi
Yes I have black floaters in one eye. Thy developed when I was on the initial treatment of CDT. I have just been to the optometrist, but she didn’t really want to blame the drugs, just said many people develop them and more so with age (I am 64). I certainly did not have any before I started with the drugs. The floaters are REALLY annoying, especially as I love to read and now have the free time to do so.

Carol

[CarolsymonsParticipant]

Hi Keith
I too felt quite OK after the collection, even returning to work for a couple of weeks while waiting for the transplant. Enjoy it while you can cos it takes quie a while to feel OK after transplant.

Carol

[CarolsymonsParticipant]

Hi Rebecca

I didn’t lose weight either even though I was unable to eat for several days. I need to exercise more but just cannot motivate myself. Returning to work next week on a phased return (1 hour a day or first week I hope) so will be more active then.

Carol

[CarolsymonsParticipant]

Hi Keith
Well done on your collection! It is a relief to have it over and done with in 1 day. Best of luck for the transplant. Hope you have smooth sailing throughout.

Carol

[CarolsymonsParticipant]

Hi Jean
What a fighter your Michael must be! Do hope he is out of critical care and making progress. Infections are a constant source of worry for all of us.

Carol

[CarolsymonsParticipant]

Well done David. You are such a good support for many on this forum and so deserve a long and healthy remission. I am 8 weeks post transplant and blood test at 4 weeks showed no paraprotein and normal light chain ratio….let’s hope it stays that way. I have an offer on my flat and am excitedly planning my return to Autralia….can’t wait to see this adorable new grand daughter as all as well as the rest of my family….4 kids and another 3 grandkids. Mum is 86 this year and I am hoping to be in Oz for her birthday on 23 July…..fingers crossed!

Carol

[CarolsymonsParticipant]

Hi Keith

I am 8 weeks post transplant and empathise with you about the side effect of CTD and the pain from the GCSF injections. At the end of 6 cycles of CDT I could barely function, but things did improve over time. I had terrible pain for a day or two from the injections and like you they became more and more difficult to do as time went on, but I was only doing 1 a day. They say the pain is a good sign for collection and in my case I did very well, collecting 15
million cells per kg of body weight in 4 hours. I do hear of many others though having to collect over 2 or more days. By the way your paraprotein went down very well with the CDT didn’t it?

I was planning to return to work on a phased return after Easter, but as they have cut my sick pay to half this month (I just received a letter and pay day is on the 26th!) I will bring the start forward to 1 April……not looking forward to it though as I am still quite fatigued and a little “spaced out” from the melphalan (high dose chemo) administered prior to
transplant. Oh well such is life as they say!

Carol

[CarolsymonsParticipant]

Hi John

I must say I was lucky not having any vertebrae or kidney problems….but the myeloma gremlins did eat my collarbone, which is how I was diagnosed when it fractured as I alighted from the bath….nearly 1 year ago now. I do have some neuropathy in my toes from the thalidomide, but can still walk short distances OK -thank goodness. I hope they will offer you some physical therapy to get your legs into better condition. Everyone tells you you should walk while in hospital for the transplant, but as I had some sort of a cold virus, I was in isolation from day 1 and it was a bit difficult to do much walking around your bed! Even now after 8 weeks I really need to exercise more, but can’t seem to get myself motivated. I have just had a letter from my workplace today, notifying me that they are cutting my sick pay to half from this month, so I will see if the doctor will OK a phased return to work from 1 April. A bit earlier than I wanted, but I cannot pay all my expenses on a half salary. I am 64 years old so plan to retire in August this year and go back to Australia anyway.

Carol

[CarolsymonsParticipant]

Hi John

I am 8 weeks post transplant. I had a Hickman line put in before the stem cell collection and that was used for the chemo and the stem cells, plus the daily blood tests and blood transfusions, platelets and antibiotics you get given through the treatment.The high dose chemo I had at Hammersmith Hospital London was melphalan which I think is standard. I was admitted to hospital the day before the melphalan and stayed in for 14 days. The melphalan was administered over a short period of time but they do give you saline and anti nausea drugs with it. 2 days later they brought in the frozen stem cells, thawed them in the room then they were put in through the Hickman line or about 20 minutes I think….quite an anti climax really. You do become ill with nausea, diarrhoea and other gastro intestinal problems from the chemo. My worst problem was an ulcerated oesophagus which made it impossible to eat or drink for a few days….the nausea and vomiting didn’t help either! Because I couldn’t swallow I had to have several litres of saline drip as well. Luckily I didn’t get an infections and really all the side effects were quite manageable. I have to say that the staff at Hammersmith were fantastic! Since coming home I had some trouble with nausea and vomiting and had to keep taking Ondestron for a few weeks, but fatigue is a big issue. At first I was napping twice a day but now only once. Since the initial CDT treatment I do not sleep for more than 2 hours at a time at night which doesn’t help with the fatigue either. I still feel really spaced out and weak though. I am hoping to have a holiday in Ireland over Easter and then to return to work a few hours a day after Easter if the consultant agrees. 4 weeks post transplant, there was no paraprotein in my blood and my light chain ratio was normal, so fingers crossed I have a long remission. But any treatment for this disease is a
gamble I think.

Carol

[CarolsymonsParticipant]

Molly
I am in London and the care I have received from the NHS over the last year has been AMAZING!

Carol

[CarolsymonsParticipant]

Young Tom

I am so pleased for you…it is lovely hearing successful stories. I have managed to sell my unit in London after 9 days on the market and am planning a return to Australia in July. I am hoping to get ill health retirement…not sure how that will go? I do not really know what awaits me as far as treatment goes when I relapse back in Australia, but as I have dual citizenship I guess I could always come back to the UK. Being such a low incidence cancer there are far fewer myeloma patients in Australa than here, so I am unsure how far I will need to travel to locate a myeloma specialist. Nevertheless I really need to be home with family and friends, not to mention the sun, sand and sea waiting for me in Surfer’s Patadise, Queensland where my unit is!

Carol

[Author]

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