Hi Phil,
Between us it seems we have an almost complete body rash!
Thanks for the suggestion, I have had co- trimoxazole in the past, but not for many months now. Like you I cut down on all the medication to see if that was the cause but even med free the rash persists. It is odd as some days it’s worse than others but I can’t work out any common factor that might trigger it.
I’m Seeing the dermatologist next week so that might throw some light on it. It’s my daughter’s wedding at the end of the month so it would be good to lesson the freaky look if possible.
Hope you remain rash free too
Judy
Hello Jennya,
Thanks for getting back to me. Just an update on my rash!
I stopped the E45 cream as it seemed to be exacerbating the situation and had an emergency appointment with my GP. Having sent her a photo of my face that wasn’t an issue. She prescribed Flucloxacillin and Terbinafine so attack it on two fronts. I have to say within three days there was a significant improvement and by the end of the week when the penicillin tablets were finished it was 95% clear with only my nose and ears still an issue.
TheTerbinafine, an anti fungal, carried on for a second week and before they were finished I could feel the dry flaky skin reappearing. Apart from one day when I could feel the heat rising in my face it has never been as bad as it was before going to the GP. I use Epimax as a daily moisturiser. I was taken off the Lenalidomide for a month to see what effect that would have but as my face improved so shortly after stopping it I’m more inclined to think it was the Flucloxacillin that helped my skin.
I have been referred to a dermatologist and have an appointment early next month. I’ll update after that.
Hope you itching and situation improves soon
JudyG
Dear Lottie,
I hope you are feeling ok still and are coping with your treatment.
Having just undergone harvesting I thought I would get in touch to reassure you about the procedure.
The filigrastim injections haven’t given me any side effects and due to a well established roll of fat around my stomach easy to self administer. I didn’t find them painful.
In my case the hope was to collect enough stem cells for 3 transplants, 2 planned and one for when I relapse, so I was booked into the hospital for 3 nights as it was an early start on the first day. Day 1 started with early blood tests and additional dose of Filigrastim which I had been taking for the previous 4 days. I then went to X-ray for the insertion of the femoral line. The paperwork took longer than the procedure and with the local anaesthetic it wasn’t at all painful. Harvesting began at about 10.30 and I was rigged up to the machine until 2.15. There is no escaping the machine so when necessary a commode was brought to me. I found wearing shorts made access to the femoral line easier and easier going to the loo. I was grateful for a good book and other things to keep me occupied. At 2.30 the days collection was whisked off to the local lab for a count and to be frozen. Unfortunately my stem cell count was only 0.7m when each transplant needs 2.5m cells so I was given another injection, Plerixafor to boost collection. This was given quite late at night and I was warned it could lead to a quick dash to the toilet in the early hours of the morning, but I was fine.
Day 2 of harvesting went smoothly and most of the time was taken up with the SCT nurse telling me how the transplant it’s self would work. 2.89m stem cells collected so that made me feel more positive.
Day 3 , the machine started playing up mid morning, it started when I had to go to the loo, but I was assured that must have been coincidental! Harvesting stopped at 12.30 so I was a little concerned that there wouldn’t be enough stem cells for 2 transplants let alone the third. I went back to the ward to have the femoral line removed feelings a little deflated. Results from the lab came through quite quickly and I have enough cells for two transplants.
During the whole process my femoral line had leaked a little ( the advice from the nurse was never wear your good underwear to hospital) and after being discharged it leaked rather alot and with a spike in my temperature I was re admitted for another night just in case. Perhaps I shouldn’t have watched something on the tv that made me laugh or walked down the stairs when leaving the ward. However I was very glad that the leak happened when I was still in the hospital not on the journey home.
Hospital stays are never restful and next time I will pack earplugs. My stomach area is pretty bruised and I have felt quite tired during the week following harvesting. In theory I should now be given a proposed date for the transplant but as that is not forthcoming I am about to start 2 more cycles of chemo. These will be instead of receiving them after the transplants not additional ones, for which I’m relieved.
Judy
Hi Lottie,
I have just read two other useful books from Blood Cancer UK. Myeloma , which explains in layman’s terms much of the medical jargon you will hear over the next few months. It explains what the disease is and how to interpret your blood results. Although your consultant will probably go through all of this when you are first seen, I didn’t take all of it on board and this is a good reference as back up.
The second book I requested was Blood stem cell and bone marrow transplants: The seven steps. Again very informative and as I’ve read this before my appointment with the consultant it has raised questions I need to ask.
Both books were produced 4 or 5 years ago so do not have the latest treatment listed but were reviewed more recently so there is no reason to assume that the information is not accurate.
Best Wishes
Judy
Hi Lottie,
I am a newly diagnosed 60 year old and like you this all came as a bit of a shock. I had visited the GP about something else entirely and on doing routine blood tests the myeloma was picked up. Apart from feeling a little tired I had not noticed any of the symptoms associated with the disease. My consultant has classified me as stage 3 with aggressive cancer.
I am on almost the same course of treatment as yourself just without the prednisolone and I am half way through the third of four cycles. The heavier doses of dexamethasone 40mg during cycle one made me very tired and unable to do much, but this could also have been caused by my low hb levels. I have been very shaky and a persistent feeling of being slightly drunk to the point where I haven’t liked to drive. After the third week of treatment I thought about finding a walking stick for reassurance. Apart from that my side effects have been minimal, the only slight neuropathy that is constantly mentioned has been in my lower lip!
The steroid dose has reduced in subsequent cycles and the side effects have reduced slightly. For the first time I am steroid free this week as for me the Daratumumab had dropped to alternate weeks and only then do I need the steroids.
I have found you get into a routine. I have chemo on Friday, feel good then and on Saturday, by Sunday evening I start to feel shaky and then Mondays I’m not up to much, often sleeping a large part of the day, then I start to feel more energetic by Tuesday night. It has been the same most weeks. I cannot pretend to be as productive as pre Diagnoses as gardening now involves secateurs rather than a spade and any work is interspersed with longer than normal tea breaks.
My taste in food has changed and all things I found too sweet previously are now the ones I crave. Coffee, wine and blue cheese are no longer on the menu but pineapple is first on the shopping list.
I now have been given the first appointment in June to discuss stem cell treatment. I was warned that this could be delayed as there was a backlog due to covid but now due to the nature of my cancer I am further up the list. Having put off researching more as it seemed a long way off and a little daunting, I must look into it more now.
The speed at which things happened has been quite overwhelming with a host of checks and appointments in the first month of diagnoses, all of which I have been very grateful for. I was given the Myeloma UK info pack which has been invaluable as it covers many questions you may not think of mentioning when seeing the consultant or as back up when you’ve forgotten something. All staff involved in my care have been wonderfully supportive and weekly visits to hospital have been positive and reassuring. I hope your hospital proves the same. I have been amazed at how efficiently everything has worked.
Good luck
Judy
