Author Topic: A/L Amyloidosis  (Read 624 times)

R J Brown

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  • Posts: 3
  • Reason for joining: Amyloidosis
  • Diagnosed: August 2020
A/L Amyloidosis
« on: March 10, 2021, 08:28:13 am »
Hi, I am new to this site, After 4 months being treated for A/L Amyloidosis, (Kidneys) I was on 1 weekly Velcade injection, Cyclophosphamide and Dexamethasone. They have now changed my treatment to , Velcade  twice weekly and now on Thalidomide 5mg daily. Just wondered if anyone else is or has been on this treatment, if so how was it tolerated and did it work. Thanks in advance.

R J Brown

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  • Posts: 3
  • Reason for joining: Amyloidosis
  • Diagnosed: August 2020
Re: A/L Amyloidosis
« Reply #1 on: March 10, 2021, 10:36:59 am »
Not sure how to edit my previous topic, but would just like to correct my mistake, Thalidomide is 50mg not 5mg as stated, this will be increased to 100mg if I tolerate it after 14 days.

GiilA

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  • Posts: 8
  • Reason for joining: My husband has been diagnosed with AL amyloidosis
  • Diagnosed: 22nd September 2017
Re: A/L Amyloidosis
« Reply #2 on: April 13, 2021, 09:10:48 am »
My husband has AL amyloidosis, diagnosed three and a half years ago. He has it in his heart and kidneys.
He started on velcade for about six months, which didn’t work, was switched to thalidomide for six months, which produced a good result. His light chains were at such a good level that he was taken off treatment for five months, when his light chains level rose, so was then started on lenalidomide at 15mg. This has been reduced over time to 5mg and he has now been on this treatment for nearly two years. His heart function has been stable, his kidney function averages about 26/28, though this plummeted when he had COVID in March 2020, but has recovered to his previous levels. Over time, the supporting drugs, eg dexamethosone, prednisolone etc have been withdrawn.
I hope this gives you some hope for the future. When first diagnosed, the future looked bleak, but three and a half years later he is still here, and able to live a fairly normal life, despite COVID restrictions. He now has a blood test monthly, and clinic every two months, instead of hospital visits at least weekly, as it was at the beginning.
Good luck for the future.

R J Brown

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  • Posts: 3
  • Reason for joining: Amyloidosis
  • Diagnosed: August 2020
Re: A/L Amyloidosis
« Reply #3 on: April 13, 2021, 08:25:24 pm »
Hi GiilA thanks for your reply, unfortunately they stopped my VTD after 2 weeks due to bad reaction from Thalidomide, I went 3 weeks with no treatment but now they have put me back on Velcade X 2 weekly and Dexamethosone, (no Thalidomide, thank god) they've have referred me to the bone marrow clinic asking them to consider me for a Stem cell transplant, just a waiting game at this moment,
I'm really pleased to hear your husband is doing so well and it's encouraging to hear we are able to lead a fairly normal life, take care and thanks again, good luck for the future.