Update of Marty’s Idelasilib “Holiday.

[MartyR]

Friendnew!s old &

Well looking back at my “question” eight months ago and all those kind replies from many of you - I’m going to try and summarise my break, so far, from this maintenance drug!

Well stopping Zydelig meant that I withdrew from the GS Clinical Trial - resulting in three monthly appointments / no CT scans and less blood work. At that time my Doctor indicated that I was “in Remission and had a stable disease”. Over the last eight months my blood test have shown a slight movements (WBC 4.6 to 13.3 // Lymphacites 0.64 to 3.68 // Plt 220 to 188 ). - which is only to be expected.

So with CLL in the back of my mind my Osteoporosis was the next priority and after several appointments it was decided to repair one of my vertebrae with a process called (Vertebroplasty.). Well this has appeared to reduce the pain level - but I still have an appointment to evaluate the pain, strengthening and other damaged vertebraeq.

Last week I started a new process to remove some of my warts on my hands.

Whilst I realise that the CLL is slowly returning - my Oncologist reassures me that new drugs similar to Zydelig will be available to me “as and when” I will need them - even perhaps another Clinical Trial.

But overall for these last few months I have been able to concentrate on alleviating my other problems, which directly or indirectly, may have been caused by treatment for CLL.

So my other “challenges” appear to show some improvements - which was the aim of this “holiday”

Regards

Martyn

Thoughts from the Bible; Do not let health concerns, or anything else, cause you undue stress and anxiety. “Who of you by being anxious can add a cubit to his life span?” asked Jesus. (Luke 12:25) Instead, simply try to avoid things that needlessly shorten life and impair its quality. Doing so can help you to enjoy the best health possible until that day in God’s new world when “no resident will say: ‘I am sick.’”—Isaiah 33:24.

[Ballyhoo77]

Amen Marty , I'm with you hoping and praying for you. But being human it is very hard to forget the stress and anxiety. Hopefully you can get a new treatment to solve the new issues.

[MsLockYourPosts Passed Volunteer]

Marty - I'm glad that your treatment "vacation" has allowed you to deal with some other issues. Hopefully your next treatment will be quite a way off, and who knows what we will have in the arsenal by then.

[eggemma]

Dear Martyn, I am also on Zydelig (Idealisib) My blood results are normal. I would like to stop taking Idealisib for the time being (sometimes I suffer from diarrhoea) When did you stop taking idealisib? Has another drug been suggested in case you need treatment again?

Thank you so much for your reply

kind regards

Emma

[wroxham-gb]

Hi Martyn

Pleased that the vertebra has improved to reduce some of the pain. Warts soon to disappear with the newer treatment. You also sound a lot brighter now which is good. Hope the cll progresses very slowly for you so that you get a longer CLL treatment holiday.

Sue

[Ginajetta]

Hi MartyR

I just came across some of yours posts. I knew from reading your comments and Bible quotes at the end of your posts you are my brother and I’m your 71 year old sister who was baptized in 1960. I was diagnosed CLL 2007 w/w until last month. Had dr KANTI RAI in NY as my doctor. Now I’m here in Florida and needed to start treatment. No CLL specialists except for two and they are three hours away. A few weeks ago saw doctor in Orlando does see cll patients and kidney patients. He is over an hour away. I feel anxious as I am allergic to all antibiotics except for two IV antibiotics and I think I have sinus infection. Very difficult to get to see doctor or talk to anyone in office. How are you doing? So thankful for our hope. Colossians 1:11