Treatment does not have to be something to dread

[aquafinn]

I had so many symptoms before I started treatment. Stomach issues - I was referred to a Gastrologist, ear issues - I was referred to an ENT, I had hearing issues (so bad at one point I had to borrow one of my husband’s hearing aids to hear at all)and was told I had a dysfunctional Eustachian tube, I had a lung spot that I was referred to a pulmonologist. I had itchy ears and continual allergy like symptoms. I dreaded treatment- frankly was very scared of it. But after less than one month of treatment on the clinical trial I am on (obintuzinab plus Ibrutinib) ALL of the above issues were GONE! I got the venetoclax arm of the trial but the irritating issues I was dealing with were eliminated before I even started venetoclax. My point is, I was dreading and stressed about treatment and was clueless about the positive impact it could have. I had thought the above symptoms were just life long issues that I had learned to live with. I’m starting the 5th cycle of the 18 cycles of the clinical trial on Tuesday. (Each cycle is 28 days)Tuesday is my next to last Obintuzinab infusion. I will continue with venetoclax and Ibrutinib after that. The trial has been relatively smooth and I feel the rewards have way out weighed the negatives. I’m posting this in the hope that it will be of some comfort to any of you about starting treatment. Oh, and I have received phenomenal care on the clinical trial!

[Jackpot]

I agree. Before treatment I was getting hives frequently, was itchy a lot, was having a lot of discomfort due to enlarged spleen and internal nodes, and of course, a lot of anxiety because of those symptoms. Once treatment started, the anxiety I was experiencing went way down because after five years of w and w, something was being done. It was a relief, as crazy as that sounds.

I was also nervous about the end of w and w and the uncertainty of the next step. In hindsight, I wish I hadn’t been so worried about treatment. I am on A and V in a clinical trial and the medicine is working. The care I am receiving is exceptional and I feel like I am in very good hands.

Cindy

[aquafinn in reply to Jackpot]

Me too! I wish I had not spent the energy stressing about treatment.

[AnnieZ102]

6 months post treatment (O+C), I'm still far from well, but my skin lesions, ENT problems etc have all disappeared. My haematologist said they often see unforseen good side effects, possibly not really CLL related.

[aquafinn in reply to AnnieZ102]

That’s great Annie

[Sushibruno]

This is one of my biggest fear is treatment my anxiety comes mostly from this and fear of relapsing.

[aquafinn in reply to Sushibruno]

Sushi - I understand but take heart in all the wonderful treatments that are available now and new ones just around the corner!

[Sushibruno in reply to aquafinn]

Thank you

[Newchallnge]

Thank you for sharing! Good luck and all the best. I am on match and wait but still worry about a potential treatment that is not even known to me.

[Fofzero]

Thanks for posting this, I feel that the longer I am on W and W the better, but this makes me feel more positive about the prospect of eventual treatment.

[aquafinn in reply to Fofzero]

You should feel very positive about treatments - so many options!

[NaturalWaze]

This is soooo helpful! Fear of treatment is one of my biggest anxieties!

[aquafinn in reply to NaturalWaze]

I am so glad I helped you!

[Catnap7]

So glad you posted this ...I’m with you all the way here. I had so many similar problems including huge choking lymph nodes before I qualified for the Ibrutinib

and Venetoclax trial last year. Sure the meds caused bad mouth sores for me but I know how to work with that now The point is I feel fantastic now and my oncologists, trial nurses and the entire place takes amazing care of me. I feel like they have my back at all times... LOVE my clinical trial and got

MRD negative in 12 months 🎉I’m grateful for all of it. 🙏

Catnap7

[aquafinn in reply to Catnap7]

That is so wonderful!

[Mystic75]

So happy for you! Great post - thank you!