CLL Treatment - Give your body a rest?

[MartyR]

So Friends - an interesting question for long term CLLers.

As this form of Cancer will never be the principle cause of our demise - should we consider putting the CLL Treatment Drugs to one side, to deal with the side effects.

My CLL journey started when I was diagnosed in 2001 and treated at various times over 16 years giving me "CLL survival" BUT also the same number of years of related complications needing treatment are that are now increasing in frequently and severity.

ALSO as the root cause of the majority of my complications can be attributed to the CLL drugs - like a known side effect - diarrhoea leading to low potassium..... perhaps my CLL maintenance drug (Idelasilib.) should be reduced in dose or discontinued entirely?

The list of my medical problems seems to grow with each visit.

Obviously low immune system - Shingles & warts.

Which then may lead to IVIG Infusions.

Chest infections - nebuliser treatment.

Nasal problems.

Antibiotic & Antiviral Courses.

AND

Now I have an appointment with an Endocrinologist - for extreme backache due to Cushing Disease caused by the drug I take for my diarrhoea. Then there are more noticeable side effects of Cushion’s D

•thinning skin that bruises easily

•reddish-purple stretch marks on the thighs, stomach, buttocks, arms, legs or breasts

•fat deposits that develop in the face, causing it to become round

•muscle or bone weakness

Then there is the 3 monthly Clinical Trial - CT scan / Haematology.

Combined with blood test - Biopsy and other tests!

Some weeks it seems like I live at hospital – and I’m a visitor at HOME!

I am not saying that I am ungrateful for all this medical expertise and medicine that I am receiving - just reduce them in quantity or dosage!

Then concentrate on a more healthy lifestyle taking less toxins into my body, avoiding unhealthy situations and W & W!

I take 17/18 tablets per day to either "protect" me and/or "maintain" my CLL. At each consultants appointment I'm asking if I still need that level of drugs?

So back to the original question - do I take a "holiday" from CLL treatment?

Well the answer is --- YES – I started last week after discussing this approach with those people that matter, my family, and my Consultant.

There is an informal paper from ASH 2015, where the question was asked “What happens when CLL Patients stop taking Ibrutinib or Idelalisib.” Whilst you can read the whole paper / conclusion – what does stand out for me is “A significant number of patients who came off these in Inhibitors did not need any immediate treatment as their diseases continued to be well controlled after therapy was discontinued.”

A sound hope from the Bible can help you have joy despite chronic ailments. (Romans 12:12) The Bible foretells a time when “no resident will say: ‘I am sick.’” (Isaiah 33:24) God will then cure chronic illnesses that are beyond the power of modern science to solve. For example, the Bible describes the reversal of the aging process this way: “Let his flesh become fresher than in youth; let him return to the days of his youthful vigor.”—Job 33:25.

Marty

[Justasheet1]

Marty,

You sound like a nail that's been beaten and bent

Do whatever you need to do to reset and then carry on the fight

This is all we get and better days are ahead

Like the old joke about the light at the end of the tunnel. Sometimes, it's a train.

Let's hope the Docs can straighten this out for us

Here's a great article on hope:

lifehack.org/articles/commu...

Jeff

[MartyR in reply to Justasheet1]

Jeff - thanks for your reply the other day. I've stopped taking Idelasilib for nearly a week now and my "nail" has not started rusting. Next week is scan week Dexa scan, MIR & CT all in two days - I expect to be glowing green from all the radiation! Regards Marty

[TheFlyer]

Good luck Marty on whatever you decide to do me I shall never complain about things again

Jules The Flyer

[MartyR in reply to TheFlyer]

Jules - thanks for your kind reply the other day. I've stopped taking Idelasilib for nearly a week with no problems. Next week is scan week Dexa scan, MIR & CT all in two days - I expect to be glowing green from all the radiation! Hope your CLL journey is not to difficult! Regards Marty

[TheFlyer in reply to MartyR]

All the best let us know how it goes

J

[CLLCalifornia-USA]

Well Marty, that is an eye opener. You have endured so much more than the rest of us can even imagine. I will keep you in my prayers for continued strength and healing. Please stay in touch. Best of luck, Sally (USA)

[MartyR in reply to CLLCalifornia-USA]

Sally - thanks for your kind reply the other day. I've stopped taking Idelasilib for nearly a week with no problems. Next week is scan week Dexa scan, MIR & CT all in two days - I expect to be glowing green from all the radiation! Hope your CLL journey is not to difficult! Regards Marty

[CLLCalifornia-USA in reply to MartyR]

Green, the perfect color for St. Patrick's Day☘️ Let us know about your test results. I continue to keep you in my heart and prayers. Kindest regards, Sally (USA)

[wroxham-gb]

Hi Marty

I do so hope that this treatment break works for you and it refreshes your body.

Spring is nearly here, pop the roof down and go for good drive. I'll be thinking of you.

My very best wishes are sent to you.

Sue

[MartyR in reply to wroxham-gb]

Sue - thanks for your kind reply the other day. I've stopped taking Idelasilib for nearly a week with no problems. Next week is scan week Dexa scan, MIR & CT all in two days - I expect to be glowing green from all the radiation! Hope your CLL journey is not to difficult! Regards Marty

[Peggy4]

Food for thought Marty. My CLL is still in its infancy so can't really make any useful comments. However, at diagnosis, my daughter asked if the years of severe stress had caused it she answered 'no but it probably allowed it in' from which I deduced that my body's immune system was compromised already. The years of stress have certainly worn me down.

I think you have a good attitude and I look forward to hearing how you get on.

Peggy

[MartyR in reply to Peggy4]

Peggy - thanks for your kind reply the other day. I've stopped taking Idelasilib for nearly a week with no problems. Next week is scan week Dexa scan, MIR & CT all in two days - I expect to be glowing green from all the radiation! Hope your CLL journey is not to difficult! Regards Marty

[ballyhoo]

Marty, I definitely agree with you. Taking a break might be exactly what you need. Sending Prayers your way.

[MartyR in reply to ballyhoo]

Ballyhoo - thanks for your kind reply the other day. I've stopped taking Idelasilib for nearly a week with no problems. Next week is scan week Dexa scan, MIR & CT all in two days - I expect to be glowing green from all the radiation! Hope your CLL journey is not to difficult! Regards Marty

[holly2]

Well Marty, I have only just finished cycle 1 of FCR and due to start cycle 2 this week. I already feel like a break! I am so sorry for all you are having to endure and totally empathise about all the different drugs causing new and different side effects that themselves need more drugs to treat them. It seems like madness, but what can we do! All the best and I hope that things settle down soon for you and you can get some peace and relief. Holly.

[MartyR in reply to holly2]

Holly - thanks for your kind reply the other day. I've stopped taking Idelasilib for nearly a week with no problems. Next week is scan week Dexa scan, MIR & CT all in two days - I expect to be glowing green from all the radiation! Hope your CLL journey is not to difficult! Regards Marty

[holly2 in reply to MartyR]

Well Marty I hope your various scans go OK next week and that you don't glow too green! Today I am half way through my 2nd FCR cycle and had to take 21 tablets! This is because 8 antibiotics a day have been added for my sore leg that no-one knows what it is and is being treated as if an infection. So today am feeling nauseous and of course, the dreaded diarrhoea.

But, on to more interesting things. I have been trying to work out which car that is in your photo? Looks like the former Champ Car series or Indy car? I am a motor racing fan too, particularly Formula One which, thank goodness, recommences later this month. Holly

[MartyR in reply to holly2]

Holly - Great to Hear from another F1 fan - I can't wait till the 24th - when all the new cars & driver combinations are added to the new regulations, tyres & designers - such an exciting season ahead - even Bernie missing will be an interesting time. But I'm sorry to disappoint you with my car picture - it is in fact my two grandsons - sitting in a coin operated fairground show!! Ha ha. But it seems that you are having a tough time with FCR - sorry to hear that - I too have spent many hours on the "white throne" with "D". Even now with me, some drugs given to surpress one problem- cause other problems - that why I'm taking the holiday from "I" to give my body a rest - best regards Marty

[holly2 in reply to MartyR]

Yes, forget CLL lets talk F1! Also can't wait for new season to start. It is great they have all had to make great changes to the cars and the cars certainly look good. I like the wider appearance and the lovely wide tyres which should give great grip. It will be interesting to see how things operate without Bernie. I am hoping to see Jenson Button take some role at some point as he was my favourite last year but I am glad he is not still at McLaren given they seen to be again starting the new season with engine troubles. Looking forward to seeing how Bottas manages against Lewis and hope he does well.

That is funny your photo being of your little grandsons on a fairground ride! But in my excuse it is a small photo and I have F1 on the brain!

Tomorrow is my last day of the FCR tablets - thank goodness! Then two more days of the antibiotics then I can start to recover from it before the 3rd round!

I love your description of the "white throne". Have seen too much of mine again today! Still, I am grateful not to have any of the more serious side effects that could occur so must not moan any more!

All the best, Holly.

[MartyR in reply to holly2]

Hey Holly - just a quick note to say I've completed all three Scans this week - both the Dextra & CT scans were "comfortable " - The MIR scan is unbelievable - laying down in a CT like "donut" and listening / feeling unusual sounds vibrating thro your body - for 45 mins - if you stay still - if not you go back to the start of the "section" again.

Still if it finds the results the Doctors require - then it's going to be worthwhile !! So onward to next week's haematology appointment.

Still in between is the F1 - a treat to look forward to - !!

So I hope your treatment of FCR going well as can be expected and that you don't have to use the "TV pause" button on Sunday PM to dash off to the smallest room in the house! Marty

[Cllcanada Top Poster CURE Hero in reply to MartyR]

I hate MRIs.. reminds me of lying in a tight culvert under a busy 4 lane highway, in 20 deg temperature, while they play Celine Dion in your headphones... 🇨🇦

I did 1 and half hours, only came up once for air... and a double dose of Ativan... 🙄

[MartyR in reply to Cllcanada]

WOW !! CLL 🇨🇦 - 90 min - my 45 seemed like an eternity!! You would have thought there is a better way of doing an MIR without so much noise & vibration - still if it gives the answers! Marty!

[holly2 in reply to MartyR]

Hello Marty, that is good news that all your scans went OK. I hope you get good results next week when you see your haematology consultant.

I am feeling much happier now that FCR no. 2 is done and dusted. Just a bit tired. No abnormal visits to the white throne now, thank goodness!

So looking forward to F1 next weekend.

Best wishes, Holly.

[maggiesgrandmom]

HI Marty,

I had to discontinue Ibrutinib in November for Cardiotoxicity. I was panicking because I thought I was supposed to be on this for life. I had four weeks of flu like symptoms and I thought it was coming back big time. But now I have no bad cells in my blood! What the heck! It looks like I am in a little remission and I wouldn't have know it if I had not stopped the drug (after 20 months plus Gazyva).

So I keep thinking - wow I am glad I had to stop.

Only problem is that I still have the heart problems which I did not have before I started at 56.

By the way I think we will no longer be sick when we get to heaven. This life is full of sufferings for all of us in so many different ways. But heaven is around the corner for everyone no matter the diagnosis!

I vote for taking a break and seeing how you do!!

[MartyR in reply to maggiesgrandmom]

Janice - thanks for your kind reply the other day. I've stopped taking Idelasilib for nearly a week with no problems. Next week is scan week Dexa scan, MIR & CT all in two days - I expect to be glowing green from all the radiation! Hope your CLL journey becomes easier and like me, you can concentrate on other issues! Regards Marty

[-buster-brown- in reply to maggiesgrandmom]

Hi-I also had to go off Ibrutinib, after being on it for 2 years, becaus of heart issues as well. I'm only 55 and I now have ventricular tachycardia. What type of heart problem did Ibrutinib give you? A-Fib? I'm supposed to b starting on Venetoclax in a week or so. I am Leary about these drugs and the side effects they all have.

[maggiesgrandmom in reply to -buster-brown-]

hI buster-brown I had a whole host of side effects, high bp, racing heart, shortness of breath and finally mental fogginess ( couldn't find the right words). With that I went off. It is almost a year and I am still ok. Just really bad immunoglobulinemia.

Good

[maggiesgrandmom in reply to maggiesgrandmom]

Good luck on venetoclax, that will probably my next step when things ramp up again.

[-buster-brown- in reply to maggiesgrandmom]

Janicelee-

So r u taking nothing right now? We talked about having me take a break from medicine for awhile-but then my Dr was afraid I would then b at a greater risk for Tumor Lysis. I start Venetoclax in a little over a week.

[maggiesgrandmom in reply to -buster-brown-]

yes, I was shocked when I didn't go right into an exacerbation of the cll. At first I felt very bad for about three weeks but they decided it was withdraw from the Ibrutinib. But for 10 months now my lymphocytes are normal, lymph nodes are down. Platelets normal.

Hoping it stays this way! IG is very low. Had IVIG and it made it go up but also got elevated liver enzymes and pain all over. supposed to get another treatment soon. Liver is better but not pain. I am going to try to go on an anti inflammatory diet.

[canadagoose]

Marty,

Have been dealing with this for 3 years less than you and have not had the side effects you have suffered, but have gone through almost every treatment available. Last year, when running out of options it was time to face this question head on. We don't take the time to examine our own mortality in our society. Our doctors and families don't want to hear that we are running out of steam. I have never had a serious conversation about how this all ends with any of my doctors even though I have tried. The bible offers hope but also reality. From ashes to ashes, dust to dust. I hope you find someone willing to talk about your fears, hopes, what you want, how much more you can take, and the ultimate end for all of us.

Debbie

[MartyR in reply to canadagoose]

Debbie - thanks for your kind reply the other day. I've stopped taking Idelasilib for nearly a week with no problems. Next week is scan week Dexa scan, MIR & CT all in two days - I expect to be glowing green from all the radiation! Like you I find talking to Family & friends difficult- but I'm starting to contact cancer organisations - should be the impartial listening ear. Proverbs 17.22 A joyful heart is is good medicine! Regards Marty

[kathyg]

One day in heaven believers will be whole, no cancer or side affects. What a day that will be.

[MartyR in reply to kathyg]

Kathy - thanks for your kind reply the other day. I've stopped taking Idelasilib for nearly a week with no problems. Next week is scan week Dexa scan, MIR & CT all in two days - I expect to be glowing green from all the radiation! Hope your CLL journey is not to difficult! Regards Marty

Proverbs 17.22 a joyful heart is good medicine!

[kathyg in reply to MartyR]

MartyR - What a wonderful verse Proverbs 17:22. I also love Jeremiah 31:3 I have loved you with an everlasting love therefore with lovingkindness I have drawn you. I have been on W&W for 9 yrs. Some sinus infections and other minor stuff. I will be praying for you. May God bless Kathy

[PlanetaryKim]

Hi Marty. This is a very interesting and important question you posted 3 months ago. And lots of great replies. If you are willing, is there an update you can provide on the progress of your drug holiday? Is it still in effect? Has your health improved or held the line? Good luck to you!

kim