For the first time since I’ve been diagnosed 4 years ago my doctor is having me come back in 6 weeks.My numbers are up ,lymphs enlarged and
he is concerned about my sinuses/ears that have been an issue for 6 months that enlarged lymphs are causing this issue too. He is talking about a trial that includes a 2 pills and an iv treatment. The trial lasts a year and he said is having promising results. He casually brought it up last visit too. He said the treatment is no cost to me if I qualify. He didn’t want to give more details until he sees me in 6 weeks. Do any of you have any idea about this trial? Thanks! Lisa
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aquafinn
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Ask him which trial and which drugs it is. It sounds like it could be ibutrinib plus Venetoclax plus Obinuzimab (probably spelled wrong). If so, this is a really good trial and a really good combo.
I just started Venetoclax with Rituximab ( which is just like the Obinuzimab) for similar reasons to yours and I am so happy I did. Everything is resolving really well and I can see the light at the end of this dark CLL tunnel.
I would not hesitate or worry about that combo. It is amazing!
Wow - this makes me feel so good. I have really thought treatment was further away. I was not mentally prepared to start thinking about it! I’m also dealing with my doctor being 2 1/2 hours away and working full time.
My husband is on that trial and loving it. I will say the "no cost" part is a bit misleading. The drugs are covered but the increased apts and tests as well as administration of the drugs are billed to your insurance. It's still a huge cost savings but just letting you know that it's not fully covered by any means.
It took me about 2 months to wrap my head around treatment. I thought I would have years before treatment and I was a little angry that my symptoms were progressing so soon. However, now, I don’t know what I was so afraid of, because I was really miserable! Now, after only 6 weeks, I am already feeling so much better! I would do it again in a heartbeat.
My doc is also about 2 hours away plus a ferry ride. and I have had to go over there once a week for the last 6 weeks and for 4 more. Then it will go to once a month. Those are long days, but it will be over soon and then I can look forward to getting my real life back.
With a trial, there are more restrictions, so make sure you understand the requirements, but the care you get is awesome. And you get about a quarter of million dollars of free medication! Can’t beat that! You may need to take a few days off work, but some folks are going to work the next day with no problems.
I choose not to do the trial because I did not want Ibutrinib (for my own reasons), but it has worked really well for many.
I am having great results with the V plus R, which was approved for first time treatment in May of this year and my insurance is covering it all. So like I said I would start this treatment again in a heartbeat!
I guess I’m nervous about the treatment because the doc did such a good job explaining to me why treatment is not necessary when I was first diagnosed. I had such a hard time with the “you have cancer but we wait to treat”. Now that we are talking about treating it’s scary. I don’t feel horrible but I have a variety of vague symptoms that I have learned to live with. I’m hopeful that when I’m treated I will feel so much better that it will make me realize how badly I was really feeling?
That's exactly how my husband describes it, not even knowing you were feeling bad because it was such a gradual process. Felt "ok" before, feels fantastic now.
Hi Aquafinn, I completely understand how you are feeling, my numbers are not that bad. When my Dr suggested treatment(due to tumor burden, enlarged spleen etc) two months ago I said nope I don't think I need it....truth be told I was scared, angry and thought I know my own body and it will get better. Well fast forward a mere two months to today and I have Uvetis which is still not cleared up, Sinus Infection for over two weeks still not clear, and I now look like a line backer with huge neck nodes and golf balls under my arms very uncomfortable (not factoring in ones in my lungs, abdomen and pelvis). Now I am ready for treatment, I am waiting for one final IGHV test( which is taking an inordinate amount of time to get back) to begin either FCR or IB. It's strange how two months ago I thought the Dr was crazy for evening suggesting it now I want to hurry and get started, tired of being tired and uncomfortable.
Btw I'm 49 was diagnosed at 45 and thought for sure I would be watch and wait forever because my numbers are good...relatively speaking of course. It's amazing how we all share the same disease but our experiences can be similar yet so individual.
I am so sorry you are so uncomfortable and I am glad you let me know how quickly things can change. I have not felt fantastic in a long time but you have made me think it might not be good to wait until I’m miserable. I sure hope you start treatment quickly!!
It certainly was "the kick in the pants" I needed. I guess when you think about it if you delay too long and get really sick I would think the treatment would be that much harder. I don't know.
Keep us up to date, this group really carries people through the highs and lows. I feel lucky to have stumbled upon it just a few months ago.
I was on a drug trial that included Obinutuzimab, now following up with Venetoclax, done with 6 months of Rituxan. I've never felt better, working full time as well and just started jogging again for the first time in 6 years. Every once in awhile I have fever episodes that last 24 hours but have learned how to preempt it better with some meds. It's my personal opinion that the Venetoclax affects my lungs, they are volatile and easily assaulted by smoke, pollen and dust in the air. Other than that, my experience is that it's a very easy drug to take, I feel so much better on it! The only co-pays I had on the drug trial were labs that weren't part of the trial data and CT scans that were at a discount due to the trial. The most expensive part is the meds and they were completely covered! All the best to you in your journey!
The nervousness is normal. My husband has been on ibrutinib for 3 months and what a change. We were scared too, but waited a bit too long. I encourage you to read some of the posts about the success people are having with the new treatments. They have been so encouraging when we were approaching treatment. Keep us posted!
Bless! Apparently he might think it’s time for treatment. What is your diagnosis? Ask him why you can’t do traditional therapy. However, he may want to target the sinus and ear infections. Keep us posted! Don’t be nervous; we are all in this boat together! Nerves, infections, nausea, fatigue, pain, and on and on and on!
It’s not that I can’t do traditional therapy I think he just really likes this trial. To be honest I was expecting my numbers to be fine, not expecting him to be able to feel enlarged lymph nodes, or to want me back in 6 weeks. When I tried to ask more about the trial he said let’s talk more in 6 weeks. Lisa (live in MO - Docs in Ks)
If it helps any; I keep enlarged lymph nodes under my arms the size of walnuts. They also show up in my cat scans throughout my body. My doc is not concerned at all.
I stay nervous too; I was getting labs and seeing my doc every week during the past months of December and January. I was not on therapy yet. Hang in there; it’s a part of your life now. We can stress out or go with the flow! I often stress out but my labs are good.
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