[jbalParticipant]

Hi

Husband saw Consultant yesterday and Lambda protein now disappeared!!! Consultant had no idea what caused the anomaly. She said sometimes seen after AST but my Husband is 3 yrs post transplant. The fact it was present in last 2 lab results would suggest it was an actual reading, we’re just happy it seems to have gone and hopefully doesn’t come back!!

[jbalParticipant]

https://www.gov.uk/government/publications/decision-on-evusheld-as-a-coronavirus-covid-19-treatment-letter-to-patient-groups/decision-on-evusheld-as-a-covid-19-treatment

[jbalParticipant]

Hi Susan
Gosh, I’m amazed at how different peoples experiences with Lenalidamide are. Thankfully Hubbys skin appears to have calmed down a bit and we may try next cycle without the antihistamines.

Low white blood counts seems to be common problem so we’ll see what todays bloods show when they are reviewed next week!!

Thank you for responding and take care
Jane

[jbalParticipant]

Thank you for your responses. Blood tests tomorrow and review next week !!

[jbalParticipant]

Thank you Jane
Yes I agree completely. I think there is a discussion to be had about dosage when he is next reviewed.
Did you experience any side effects? And if so did they resolve over time or not?

Jane

[jbalParticipant]

Aaah that’s interesting. He started on co-trimoxazole on Induction and had a similar reaction and was switched to Dapsone which he took during Induction and for 100 days post transplant Transplant and tolerated this well.

He stopped taking any prophylactic meds, just the Lenalidamide with aspirin.

Would be interested in any other experiences with Lenalidamide.

Thank you.

[jbalParticipant]

Thank you both
The rash started out like prickly heat on his back and then developed into very dry skin on his face which then progressed to red and itchy patches which became raised and looked a lot like exczema. At this point we decided to stop taking the Lenalidamide and wait to speak to the Consultant. Maybe if we reported it sooner and he started on antihistamines and/or the dosage was lowered at the prickly heat stage it may not have progressed further?

The Consultant has advised to permanently discontinue the treatment without considering altering the dose and looking at supportive treatments such as antihistamines which is hugely disappointing. We will discuss this with her again in 8 weeks and may consider asking for a second opinion.

Knowing that you both had reactions to the Lenalidamide and these were resolved is encouraging – thank you.
Jane

[jbalParticipant]

Thank you Mulberry. That is very reassuring.
Jane

[jbalParticipant]

Hi. Ni it was Co-Trimoxazole

[jbalParticipant]

Hi Lilib
Yes. The drug used to stop the build up of Utica acid was only for the first cycle. They also changed his antibiotic to another one as that was thought to also be a potential cause of the rash/breathlessness and everything calmed down pretty quickly when this was stopped/changed.
Husband now due his SCT in 2 weeks and we have informed the transplant tm of the reaction he had so they don’t prescribe the same anti biotic when he’s an in pt.
how all goes well and this soon settles.
Jane

[jbalParticipant]

Thank you Rachel, that’s very helpful. Any advice on specific toiletries? I know oral hygiene is very important. Any special toothpaste required? Toothbrushes….type and quantity? And any advice on shampoo for the inevitable hair loss?
Jane

[jbalParticipant]

Hi
I’m reading this anxiously as my Husband is due in for SCT at Nottingham City Hospital in next few weeks.
I am going to speak to Consultant, Transplant Team, GP & MP if necessary to ensure he gets his jab in a timely manner afterwards!!
We have a 15yr old son about to start his GCSE yr in September and it concerns me having him in school and his Dad not being vaccinated!!

Many thanks
Jane

Anybody any idea how long to wait after SCT for Covid vaccine based on the advise of the clinical teams of those who have had their SCT

[jbalParticipant]

Hi
Yes it did subside. Thought to be an allergic reaction to the drug used to stop the build up of Uric Acid taken for the first couple of weeks. This was stopped and been no effects since.
Just finished 6th cycle and been fine throughout.

[jbalParticipant]

That’s encouraging to hear. Thank you so much
Jane

[jbalParticipant]

Thank you so much for the top tips Alexandra.
Jane

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