CLL Support Association
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Update re visit to Moffit in Tampa to see my Hematologist

Just as I thought my reds dropped a little more in 3 weeks and of course spleen still enlarged. Dr Panilla's rec is to start treatment although he said I could wait a few months with close monitoring as they are not critically low. Based on my markers I have 3 choices: Number One: Bendamustine with Rituxan........Number Two: Ibrutinib...Number Three: Gazyva. Numbers One and Three would be twice a month for 6 months while Number Two would be a pill every day for the rest of my life. I haven't decided yet but have ruled out Number Two due to costs that would be very expensive and there's the possible A-Fib issue and, it can cause melanoma. I go back June 7th to tell them what I have decided and to schedule a BMB and CT scan from chest to groin. All of this being said my main issue which has been ongoing is GERD and Gastritis. I had laprascopic surgery for gerd in 1994 but the procedure seems to have lost its efficacy and nothing I take helps including dietary changes so, will call clinical team/nurse today as I am thinking I might have to have it redone.....and so the worrying continues...

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Oh Ladydi, now the real fun begins. What choices. You are wise to have the other done before starting treatment. I will be praying for you in all you are going through and decisions to make. It sure is not an easy journey.

Hugs,

Linda

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Thanks Linda! The GI issues are bothering me the most at present. I'm going to call my clinic this afternoon and see what the say and also my GI doctor

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Hi Ladydi - I am thinking positive thoughts for you and wish you all the best. It is never easy when there are additional issues to deal with along with the CLL. Glad you have some time to think about, which option for treatment. I had not heard that ibrutinib and cause melanoma. The National Cancer Institute is recruiting for a Phase II clinician trial using ibrutinib to treat patients With refractory Stage IV cutaneous melanoma so I was wondering.

Sorry you have to deal with the acid reflux and gastritis, both of which can be painful. Please keep us updated.

Big hug,

D.

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Thanks Mystic75

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Lady,

I used to have awful GERD. Now I don’t eat after 7pm and have an adjustable base bed.

Cured me and no pills.

What have you tried so far?

Jeff

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Hello justasheet1. .....I had surgery for gerd (laprascopic) in 1994 which at that time I was told it might only be good for 15 years but I have had issues off and on for several years and have tried several of the proton pump inhibitor drugs...currently on Dexilant. What I'm wondering is if all the severe coughing and gagging in the sink at night for 5 months due to sinusitis and bronchitis may have done something to my throat muscles because when I swallow it feels like a clogged drain and I get spasms in my upper chest. Additionally as a retired nurse I think as we get older our stomachs produce less mucous to dilute the stomach acids. I'm going to check with my GI doctor and also will call my cll clinical team nurse for suggestions. Regarding bendamustine and Rituxan I'm going to ask my hematologist when I go back in June on average how long do people stay disease free although he'll probably say everyone is different

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Lady,

I forgot to mention I saw your doc and am unmutated too. Lots in common.

Ibrutinib and Gazvya weren’t available yet. I had BR. I know they say the remission from BR amongst the unmutated crowd is short but I’m almost 4 wonderful years of remission and I’m 11q- too.

I developed pneumonia at the end of treatment but otherwise have felt great and continued working as a firefighter.

I’m retiring next month after 30 wonderful years.

Good luck with your decision but choose wisely. If I could have had your choices, I probably would have picked Ibrutinib in a clinical trial with something added.

Jeff

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I asked about clinical trials and there aren't any at my clinic at present. I have heard Ibrutinib is very expensive and I would have to take it everyday for the rest of my life and the possibility of A-Fib scares me

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Hello Ladydi. I hope everything goes well for you. What is A-Fib and how does it relate to Ibrutinib? Kind regards

Graham - London, UK

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Atrial fribulation.. or flutter, is an irregular heartbeat that can be caused by Ibrutinib in some patients... its a side effect. It raises a concern for a stroke...

It can me managed with blood thinners in some others, need to stop treatment.

~chris

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Many thanks Chris

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Hello Graham64....A-Fib is when the heart beats really fast and not only is it an uncomfortable feeling it can cause a stroke so often docs prescribe a beta blocker i.e. metoprolol and a blood thinner i.e. coumadin. Literature I received from my hematologist says it's a common side effect and people on here have posted that as a side effect.

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Many thanks Lady Di. Noting it all down just in case. Graham.

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I had no idea Ibrutinib can cause malenoma😢

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Not cause melanoma, just reported in those that have been on Ibrutinib. Cause could be due to previously administered drugs for CLL, or just the increased risk that comes with CLL. Read ALL the post replies...

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Hi Ladydi49,

Your post is the 2nd I have seen in the last 24 hours here, saying the Ibrutinib can cause Melanoma. Can you provide a reference or source where that was published?

I don't think it is true, but interested in tracking down the who, what, why that was stated.

Len

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Me too... Len beat me to it...👍🏼

CLL increases the risk of melanoma... no idea about Imbruvica (ibrutinib).

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It was on the info sheets my hematologist gave me yesterday

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Imbruvica (ibrutinib) is being tried in a trial to TREAT cutaneous melanoma.. I doubt it would be a cause...

This phase II trial studies how well ibrutinib works in treating patients with stage IV melanoma of the skin that has not responded to previous treatment. Ibrutinib may stop the growth of tumor cells by blocking some of the enzymes needed for cell growth.

clinicaltrials.gov/ct2/show...

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Interesting....however, I learned in nursing school that there's no such thing as a safe drug not even an aspirin

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The threshold of when to treat CLL has been tailored to be at that point when the risks of going without treatment on balance are greater than the risks of undergoing treatment, which are determined by the adverse affects of the treatment drugs. That collective wisdom of when to end watch and wait is presented in the iWCLL Guidelines and similar documents.

Having a clear understanding of the respective risks and benefits of different treatment options is important for each of us so we can choose what's best - just as you have done. (Oh for a choice for many of us!)

I too am very concerned at this second claim that 'ibrutinib can cause melanoma'. Others contemplating treatment with Ibrutinib need to know the basis of this claim and the likely risk, so that they can make an informed judgment.

Sorry to hear of your challenges with GERD/Gastritis. WIth respect to your throat muscles, do you know if perhaps your throat may be slightly restricted by lymphatic tissue/nodes in that area that have enlarged due to your CLL?

Do you know what the laparascopic surgery actually did that has likely lost it's effectiveness? Was it fundoplication surgery to prevent acid reflux into the esophagus by any chance? The effectiveness of that surgery does indeed lessen over time and the reflux gradually returns, causing pain due to acid burning of skin not as well protected by a mucus lining as is the stomach lining.

Neil

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The drug label states...

5.6 Second Primary Malignancies

Other malignancies (range, 3 to 16%) including non-skin carcinomas (range, 1 to 4%) have occurred in patients treated with IMBRUVICA.

The most frequent second primary malignancy was non-melanoma skin cancer (range, 2 to 13%).

dailymed.nlm.nih.gov/dailym...

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Hi AussieNeil....yes to your last paragraph and re your second to last paragraph I'm not sure. I do have enlarged lymph nodes in the front of my neck under my chin. I did have sinusitis and bronchitis for 5 months and spent many a night coughing and gagging up phlegm in the bathroom sink. I do have terrible allergies and maxillary sinus issues which have caused frequent throat clearing so, who knows?

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Could you please check and confirm whether that info sheet says that CLL increases the risk of Melanoma OR if it absolutely says that Ibrutinib increases the risk of Melanoma.

Len

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One question would be if you go with Gazyva is there any reason you couldn't use BR down the road if needed. One friend went from Gazyva to Venetoclax which she gets free from the company. You could also ask about acalabrutinib off label and whether they have a compassionate use program.

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I think the 3 choices were based on my markers and I have read Gazyva is used in relapsed cases?

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When I was first diagnosed, I was treated with Bendamustine & Rituxan when I should of been on w&w. That’s why a CLL specialist is so necessary.

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Someone on CLL Forum was just approved for a year of acalabrutinib off list for free from the company through OSU. I don't know whether the company plans to continue after it is approved for CLL, but it would be worth asking about that option.

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I too am scheduled to see Dr. Panilla in June. My gut has me nervous with that. I see Dr. Byrd at OSU once per year, but since moving to Tampa needed local support. Feedback I get with Dr. Byrd is Acalabrutinib, but of course they have tested it at OSU extensively.

Since cost is an issue for you, going to OSU might be undesirable...... To answer your question I would select Gazyva mono-therapy. My feeling is it will give you couple years to better understand the coming treatment options, and insurance will pay for infusion. Not sure if this will improve your RBC count, but the act of knocking your CLL down may increase your RBC.

Not sure if mono-therapy is an option, but I seem to remember a lot of online discussion that chlorambucil adds little to the outcome.

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Hi tekusa....my choices were given to me based on my markers: Trisomy 12 and unmutated and no deletions. They all scare me! I learned in nursing school that there is no safe drug not even an aspirin...sigh

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Ibrutinib can cause GI issues. Gazyva does not offer as long control but can buy time perhaps till newer treatments.

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I read somewhere about ibrutinib and chance of melanoma. Will go over my papers to see exactly what it said.

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As we asked Ladydi above

" Could you please check and confirm whether that info sheet says that CLL increases the risk of Melanoma OR if it absolutely says that Ibrutinib increases the risk of Melanoma".

Thanks Len

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These are difficult choices but I agree with those who say we're fortunate to have choice along with expert opinion.

BR, Ibrutinib, and a target therapy trial. I chose to go with a trial after confirming with my doc that I would still have those choices, and possibly more if/when the trial drugs failed.

It's been 15 months since treatment started and I've had a very good response so I'm hopeful for another 6 to 12 months of good blood work. It hasn't been what I'd hoped for. I wanted the "I feel better than I've felt in years" and "I'm able to continue working and feel great" results I read about here occasionally.

I think my next choice will be BR. Even a shorter span of feeling well would be worth it to me. Being on another maintenance drug that just keep it at bay and has uncomfortable side effects is a second choice.

I'm glad to have had this time on the trial to get more comfortable with the idea that for now at least, the treatments don't work forever for most of us. While that may be changing quickly it looks like I'll have the "opportunity" to experience more than one, and possibly several treatment options on my journey. That takes off some of the pressure to believe I made "the" right choice. There are probably several right choices and I trust my CLL specialist to keep me clear of any wrong ones.

Best wishes in your journey to make a decision that you feel comfortable with!

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I wish my hematologist could have said: If it were my family member I would suggest.....

That being said he did not do that and all three choices sound scary..side effects etc

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I'm so sorry you're faced with scary choices. When I asked my CLL specialist he said he would choose a trial if he was making the choice for himself, but I understand some doctor's reluctance to do that. It does add weight to their choice.

What I've gathered from this site is that there is just no way to predict how you will respond to any of the treatments. Members report easy treatment periods with good results and terrible side effects and poor results and every combination and result in between. You have support here for whatever choice you make and lots of us wishing you all the best as you face this scary time.

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Thank you so much DMary....Wishing you well

Dianne

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Forgot to mention...I asked my hematologist if there were any trials but he said not at this time

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My husband is 11q deletion, and BR failed for him. It worked on some lymph nodes and spleen, but he became severely neutropenic going on 5 months....doctor said no more chemo for him. He only received 4 infusions, instead of the 6. He is now one month on Ibrutinib. We are cautiously optimistic as the neutrophils rose into the low normal range.

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Any side effects from ibrutinib? The one that scares me is A-Fib which is why I have ruled it out...

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Not yet, but he is very healthy despite his cancer.....

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There is a trial at NIH for acalabrutinib - a newer small trial. There are people who are treated there from Florida - travel and all medical expenses covered and a stipend for housing, though some fly in early and back out the same day.

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