sept149

[sept149]

just diagnosed two months ago with CLL. Put on wait but getting worse. 50 years of commercial fishing here in Alaska. Exposed to all sorts of chemicals in engine rooms I think that caused it. Any way thinking of doing the O and V treatment I don’t want to do chemo any body have any thoughts on this. Thanks for any help.

[wellbeingwarrior]

Kia Ora sept149 (from NZ).

I’m not sure anyone can (yet) make connections between occupational chemicals and hazards and CLL. Chemotherapy for CLL is not generally recommended for over 65s and is fast becoming ‘the old way of treating it’ anyway, regardless of age.

V&O is likely a good option and there are some very informed people here who can offer you research based advice on the best options available and will most likely see this and contribute.

I could… but still have my trainer wheels on 😁

[sept149 in reply to wellbeingwarrior]

thanks Made me laugh about trainer wheels. Your comments are encouraging. Spent four months in NZ in 1999 hiking and trout fishing.

[lankisterguy Volunteer]

Hi sept149,

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I agree with wellbeingwarrior there are many activities and exposures that appear to increase the risk of getting many cancers, some include NHLs (Non Hodgkin Lymphomas) like CLL. But there is limited statistical proofs of a direct & cause effect for hematopoietic and lymphatic cancers and diseases: Herbicides, benzene, x-radiation system, ethylene oxide

Occupational exposures are also suspects:

drugwatch.com/health/cancer...

People who work in certain industries that expose them to known carcinogens are at higher risk for developing cancer. These jobs include miners, shipbuilders, certain factory or chemical plant workers and nuclear industry workers.

by the CDC here atsdr.cdc.gov/emes/public/d...

A few well-known carcinogens are asbestos, nickel, cadmium, radon, vinyl chloride, benzidene, and benzene. These carcinogens may act alone or with another carcinogen to increase your risk. For example, asbestos workers who also smoke have a higher risk of lung cancer.

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Regarding when to start treatment and which treatments to use - we had a discussion yesterday healthunlocked.com/cllsuppo...

and this reply might help: healthunlocked.com/cllsuppo...

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Len

[sept149 in reply to lankisterguy]

thanks for your help.

[Pacificview]

Hello and welcome to our support community!Sorry about the diagnosis, but Obinutuzumab and Venetoclax is a good treatment.

I am currently on that treatment with 5 infusions under my belt. 1.5 weeks to go with Venetoclax ramp up. You start at 20mg a day and double the amount each week until you max at the 400mg at the end of a month. Ven start lags Obin start.

If you would like I have entered into my Bio how it is going on this treatment. You can scroll down to where I start it. I keep it fairly current so people like you can see what its like.

John

[sept149 in reply to Pacificview]

thanks for your help John

[Pearlpink]

I’m nearing the end of my V and O and it’s been fine. Have met lots of wonderful people!

I wanted to have V@O because it’s time limited, and because I’m a bit prone to arrythmias.

I had bit of allergic reaction at beginning but the nurses and doctors are so wonderful that they know what to do. It was never scarey! From the second infusion I haven’t had a blip. My spleen and lymph nodes started to shrink within weeks, and I’ve had normal blood results for months.

Good luck!

[sept149 in reply to Pearlpink]

that’s encouraging thanks

[spi3]

I call my husband's venetoclax, obinutuzumab and acalabrutinib his warrior Angels. Once he started his treatments results were immediate within weeks. He was able to walk again, he wasn't tired and most importantly he was able to hit his golf balls. Of course folks have different side effects but with O&V my hubby had none. I'm sure you are in great shape too - this also will help. Also, my hubby drinks 3 liters of water a day too (it helps your kidneys and side effects too). I'm prayingthat you too feel great and with no side-effects. One side note I truly believed that my hubby got CLL after his 4th COVID shot - but the Dr stated he had CLL in his blood it just activated it

[sept149 in reply to spi3]

thank you so much for the encouragement

[Billhere]

sept149: 50 years of commercial fishing out on the beautiful waters of Alaska,!!! The closest, I can come to that is 55 years of bicycle riding along the coast of California, here in my hometown.

I often wonder if some of the chemicals that I handled as a young boy taking care of our every day, gardening problems, or how we used some pretty nasty chemicals under the house to get rid of bugs and ants…..

but none of that really matters today, and it’s important not to get too hung up on how we get here. We probably will not even in our lifetime now what causes all these cancers.

The most important thing to know is that there are many very effective treatments for CLL, just like the one you mentioned, and many comments on that excellent combination of drugs. My only comment on treatment is to repeat and what the other readers have said regarding chemotherapy, it is no longer used by the majority of the doctors treating CLL. So if that is thrown your way, I would find another hematologist.

when I was first diagnosed, my doctor told me that the biggest side effect of the CLL diagnosis is psychological. Being freaked out and upset looking for causes and worrying the CLLsociety.org (corrected CLL Society web address - admin ). Has a lot of great information to answer most all of your questions and also, there are online and sometimes local groups that you can go to meetings and get informed or meet other people that are in the same boat if that is helpful. Ha ha. No pun intended on the boat!!

welcome to the club!!!

[sept149 in reply to Billhere]

hey your a funny guy. Careful. You might get sent to the punitentry. Seriously thank you for the encouragement

[Phartyharty]

hi. I had O&V 18 months ago. I was a former elite athlete and as a result somewhat against any form of chemical/drug treatment. However, after an initial rocky road or for you stormy waters my quality of life has improved no end.

Whilst I understand your concerns about being exposed to chemicals I have to say from my perspective it has been more than worthwhile.

Best of luck with your decision as I am sure it will be the right one for you.

[sept149 in reply to Phartyharty]

thank you for responding

[ilkay]

Sept149 I can tell you about my experiences with O&V but its up to you to decide whether you want to have it or not.

I started my treatment after being on W&W for 17 years I was shocked when i was told I needed tretament because I actualy did never thought of having CLL so it was a bit of wake up call for me. I started last april with O and later on It was planned to introduce V in the treatment , unfortunetley nothig was as planned I ended up in the A&E three times with sepsis and it was decided I could not cope with the O , had carried on with V just finished my last cyle and having bone marrow biopy and PAT scan in the next few weeks to see if it has worked. I have suffered a lot and the community here knows about my on going problems but there are so many people here that they had it so easy ride so it effects people very differently.

I wish you the best of luck what ever you choose.

🥰

[sept149 in reply to ilkay]

it’s so true that each person is different. Thanks for responding

[Ellieoak]

Dear Sept149, Do Not Do Chemo! O&V is excellent. Definitely a good place to start. Good luck to you.

[RitaBa]

I did V & O . Completed cycles Feb 2022.

This was much easier than chemo I had for breast cancer 13 years ago & I am in complete remission.

I am very happy I opted for this Immunotherapy.

Good luck & hope it works as well for you.

[sept149 in reply to RitaBa]

thank you

[sept149 in reply to RitaBa]

very encouraging thank you