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CLL Support Association
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Chemo

I was diagnosed with CLL in February. After a few months and labs not looking good I started chemo. I think it is Gayza? Well December 27th will be the 12th treatment and labs still hasn't improved. My arms are so bruised because my veins are time and they roll, so they always blow. January 8th I am suppose to have my 3rd petscan. The other two shows my spleen and liver still enlarging. In February thru also found a mass near my left ovary (had hysterectomy in 95 only thing I have) and the petscan showed it had enlarged. Oncologist will not allow a pic line or port. Last week he said chemo should have put CLL in remission after about the fourth treatment. So I see him on the 8th after the petscan. He said I may have to take a chemo pill for life. I don't take medicine not even for a headache so I don't think that would be the best route. So I'm puzzled and afraid this Oncologist isn't going the right route and it may be something worse. Anyone ever experience this before and what did you do or someone advise me what I should have or should be doing. Thank you all in advance.

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Hi Mamawof,

It really sounds like you need to see a CLL specialist for a 2nd opinion. From your several postings 6 months ago it does not sound like you and your doctor communicate well. And some of the information your doctor shared with you is inconsistent with information I have heard from my doctor.

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It is not clear where you live, but your word choices imply USA. If you cannot travel to a location that has CLL experts and you live in USA or Canada you may be able to have a video conference 2nd opinion by using this:

cllsociety.org/cll-society-...

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Or to visit a cll expert doctor see this list:

cllsociety.org/toolbox/cll-...

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Len

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Yes I'm from WV in the US. No the oncologist or I communicate well. I tell him one thing and I don't know what he hears. My platelets, WBC, RBC etc keep getting worse. My kidneys are starting to give me issues. I'm at the point that I'm about to throw in the towel and know that CLL is something I can live with.

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Please get a 2nd opinion from a CLL Oncologist/Hematologist.

They should have checked your deletion markers to help determine the best chemo to begin with.

You need the proper treatment to LIVE.

The newer meds now are incredible with good results.

Please don’t throw in the towel. Get a second opinion and look forward to a good long life.

Blessings to you and your family.

Farrpottery

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I appreciate that you are going through a tough time right now, but your specialist may be going the right route. If you have the the name of your first drug right and the second drug he is considering for you is Ibrutinib, then neither of these drugs are chemo. They are targeted therapies. Unfortunately even the best CLL drugs don't work for everyone. Thankfully, nowadays there are quite a few now chemo treatments available if one doesn't work.

If you live in the USA, you are able to have a (currently free) second opinion was CLL Specialist via the CLL Society - cllsociety.org

Neil

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I thought ibrutiniv was a bio med. Are you sure it is a form of chemo? Thanks

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I would agree with what Len and Neil have said.

I think the important questions are what do you want for yourself and how fit are you to tolerate treatment? Your CLL sounds a bit more aggressive than some given that it hasn’t responded to Gayla.

Do you want to be treated slightly more intensively to hopefully achieve a remission or have something to keep it under control?

Ibrutinib could be a good option for you but no treatment is without side effects.

The free second opinion via the CLL Society sounds like a good option but to get the best out of it you will need to have access to all your results including PET and FISH.

Best wishes

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Sounds like you need a new oncologist. He won't LET you get port!? It's your choice. Mine saved my veins and it was so nice to have hands free.

Can you travel to Columbus, Ohio? The James at Ohio State is wonderful. Or are you closer to Washington? WV is in between 2-3 CLL experts. But if you can find a new oncologist in your area, I would suggest a second opinion. I would never be able to stick with a doctor that I didn't communicate well with. CLL is chronic...for life.

Good luck! 💕

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I live in Los Angeles where I was diagnosed by a top hematological-oncologist but I travelled to Columbus Ohio to see Dr. Byrd's group for my second opinion and it changed everything. I got a different diagnosis (Stage II, not 0 and unmutated, not mutated) and they referred me to a clinical trial at UCSD (Gazyva & ibrutinib). I'm a HUGE advocate for getting a second opinion from a CLL specialist whenever and however possible as soon as possible.

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Dr. Byrd is great!

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Add me to the list of those who think you need to see a specialist, communicate better with your current doctor, or both.

Gazyva is not a chemo drug, it’s a monoclonal antibody drug which is very effective for most, but not all, Cll patients. It is a drug well tolerated by most and and some doctors prescribe it as a first choice for some people because it’s not as toxic as some other choices.

The pill for life you talk about is likely ibrutinib. It has proved tremendously effective at controlling Cll for very long stretches. It might control Cll for some indefinitely.

No one wants to take a pill the rest of their lives. But there are many people with aggressive cancers who take way worse and painful therapies that probably will not control their cancers. These people would be overjoyed at the thought that a single pill a day, with mostly tolerable side effects, could control their cancer and allow them to lead a normal life.

I am not sure why you don’t see the pill option as one for you. A good idea would be to ask your doctor and your second opinion doctor what are your other alternatives. You might find the pill a day quite acceptable compared to true chemo alternatives that are generally more difficult treatment routines with the risk of greater toxicity. If you are over 65, some of the main chemo regimes they use for Cll might not even be a choice for you as they might be too harsh or older folks.

Sorry the Gazyva isn’t working and that infusions are difficult for you. I take a pill a day and much prefer that to infusions. Find out first if the pill a day is ibrutinib and then maybe look at all the ibrutinib threads on here as well as have your doctor explain its risk and benefit profile. I am on ibrutinib and so very grateful to have it as an option. Good luck to you. Jeff

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I take ibrutinib daily. Yes, it has side effects but they're a lot better than the symptoms I had before treatment, so I'm fine with it. As for having to take a pill for the rest of my life - I was doing that anyway with blood pressure pills and vitamins so one more pill doesn't bother me. As presented at the recent ASH conference, ibrutinib is emerging as the new gold standard for CLL treatment so if you can get it, do it.

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I think I didn't explain it right. I've never had health issues. I don't take medicine for anything even after I've had a couple surgeries. I tolerate pain very well. I just take medicine. I know i’m Very lucky compared to people with life threatening illnesses. I just think there is something more going on and can’t figure out why the dr isn’t concerned.

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Seems to me that a free second opinion will both help you verify whether there is something more going on AND help you work through your best treatment options. An enlarging spleen and liver indicate that Gazyva may not be working for you, though you haven't shared what's happened to your lymphocyte count or any obviously swollen nodes you had.

There are now clinical trials of combination non chemo treatments that aim to induce long lasting remissions after a limited treatment time.

Neil

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Mamawof, it’s really hard to know with the little information provided. It sounds like you are second guessing your doctor’s decision to start you off with Gazyva and then switch you to a pill (likely ibrutinib). Depending on the type of Cll you have, you age, and other factors, Gazyva might have been a reasonable choice to start. It’s not the type of drug, taken by itself, where I would expect some long remission.

Your doctor might not seem concerned because he thinks he has a good plan for you, who knows. It sounds like he wants to give you ibrutinib. That’s the new gold standard for many types of Cll. It works amazingly well and quite fast in melting Cll nodes away and shrinking enlarged spleens.

I see you called your doctor an oncologist. It’s certsinly appropriate for a general oncologist to treat Cll, but many oncologists have general practices and treat all sorts of cancers.

You should get a second opinion from a true specialist who sees Cll patients almost exclusively. That can be an oncologist, but more often than not a hematologist who treats only Cll type blood cancers.

When you go see your doctor you should bring written questions so you can better understand your treatment plan. Whatever that plan is, I would then run it by a specialist.

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My husband had Gazyva and a short course of oral Chlorambucil over 2 years ago and it only took 4 treatments! I had no idea you could need 12 treatments of Gazyva. Obviously it is not the right treatment method. I cannot believe your doctor has waited this long to try something else. All the best to you. You will get better, but you have to find the right combination.

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ask for a second opinion !!! and in case you get ibrutinib it is working well for me....and no ones knows if it is going to be for life . The new combos are showing very good results.....and seem to be the future...... and there are other things developing ...

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Mamawof25

See the specialist. Find one no matter what it takes. It will make a difference in your life. I started BR 4 months ago and my lymph nodes have shrunk by 83%. BR is chemo plus a targeted therapy. I can actually bend over without feeling like I am crushing my internal organs. My first dr and I did not communicate. He was snarky and sarcastic. Did not tell me how bad everything was. I decided, with the encouragement of the people here to get the hell away from the guy. It was the best thing I ever did.

I am currently in a trial with one of the highly recommended Dr's...Dr Ian Flinn and my Dr who is also highly recommended Dr Jia Bi. Confidence in your team is critical to your mental well being.

Seek that specialist. Keep us posted on how you are doing!

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Hi, You have had some great advice. In the UK we cant have as many types of treatment as the USA. Iv already had chemo and I will have Ibrutinb next time. I think Im lucky. Its really expensive and a few months ago I wouldnt have been eligable. I think there are many people that dont want to take tablets but often have no choice. I have epilepsy and tablets control this and I take strong tablets for pain. Iv got used to taking meds and wont mind taking another tablet.

Im surprised that your treatment hasnt been changed before because it sounds like it isnt working. We have to be realistic and realise that we should be grateful for the wonderful choice we have as 8 years ago there wasnt a choice. My dad died of cll in 1968. He was 45. I dont suppose there was much they could do in those days. As the latest treatments involve taking tablets you will be turning your back on the latest steps forward in treatments. I hope you get the advice you need, Anne

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