The Final Countdown

[pilantd]

Hi All...tonight I accidentally stumbled onto this group. After reading several posts I didn't discover a post that mirrors my reality.

On Labor Day September 2014, I noticed swelling on my chest. The touch was tender. I then made a visit to my primary care doctor. He examined my lumps and asked me if I'd been sick. My reply was no. He told me that he'd seen this before but people are normally sick. He then excused himself and came back 20 minutes later and asked me to provide a blood lab. A few days after the lab he called me and told me my WBC count was elevated asked me to schedule an appointment to see him.

When I visited him he told me it appeared that I had some form of blood cancer. My WBC count was 29Kpkl. He told me that this was most likely the good Cancer that I could live with for many years. He then repeated himself by saying that people with lumps are normally sick and that he wanted me to schedule an appointment with the medical center's oncologist/hematologist.

I scheduled my appointment with the good doctor and he reported to me the 1st step was to complete a FISH lab test to determine which form of Lymphoma that I had. His instincts said that I have CLL but he wanted to know what my positive markers would be. When the lab result arrived he reported to me that it was 13q14 deletion. He said this is a "good" cancer.

But, he said your symptoms are interesting and you may have something different so we need a 2nd opinion. Meanwhile my WBC had increased to 36Kpkl.

On October 6, 2014 I helped clean a dirty transit bus that would be used to do a planning tour of our County. I was the tour guide. About noon I felt bumps on the back of my neck near my skull. We began the bus tour and as the day progressed more bumps around my skull arose and I had a horrific headache.

The experience was surreal. I remember telling people about what they were seeing. Meanwhile, when people asked me questions all that I can remember is watching their lips. I could not comprehend what people were saying to me. Near the end of our tour the bus driver asked me if I was okay. I told him "no" that I was forgetting what I wsaying and that I couldn't interpret what they were saying to me. He then took our group back to our office and after saying goodbye he asked me if I needed to go to Urgent Care.

He took me to Urgent Care and when they learned I was a patient of of the Medical Center's Out Patient Therapy they sent me back to the oncologist. A quick WBC lab said my count was now 44Kpkl. He then had the nurse give me a steroid that he said would do bad things to Lymphocytes. Within 20 minutTes my headache went away and I was able to communicate.

While he was certain that I had CLL he referred me to Oregon Health Sciences University (OHSU) for a 2nd opinion. He told me that while all indicators say I have CLL that it was behaving differently.

At OHSU they performed another test that ruled out CML. Then, they sent me to the Knight Cancer Research Center to do a PET scan to see what Lymphnodes were hot so they could harvest them. They removed 6 nodes from my neck and ruled out the B Cell Lymphoma and determined I had CLL. They asked me to return in 90 days. When I returned my WBC was more than 90Kltr.

OHSU recommended the FCR treatment. My treatment began the first week of FEB 2015. I continued treatment through May 2015. However, I ended up with an infection that resulted with treatment. The oncologist refused to give me the 6th treatment. He didn't believe the risk out-weighed the benefits.

In March 2017 it was determined that my WBC was increasing to above average and that I'm officially in Relapse. On April 2nd I began taking 3 Ibrutinib capsules. This medication behaved as expected until September 2017. Suddenly the "Absolute Lymphocyte" count flatlined leaving me above averSage. On October 6th my "Absolute Lymphocyte" count actually ticked up a notch.

So, it appears Ibrutinib may not work for me. My oncologist said that CAR T therapy have been approved for people who are in FCR and Ibrutinib relapse.

Does anybody share my experience or will I be dead in 6 months to a year?

[Murzik]

No, no no dead at all. There are many other options, Venetoclax, Idealisib, just run to CLL specialist at research center. Others will answer with more details, but please no cosmos escspe... U will get many advice from this community

Wanted to react to your post asap. Keep hope central....

[pilantd in reply to Murzik]

Thanks! I have to admit. This disease has been aggressive and my hope has been dwindling.

[AussieNeil Partner Administrator]

Welcome pilantd,

Some of us do have aggressive versions of CLL either at diagnosis, or perhaps worse, are told that it will be many years until we need treatment, only to find we urgently need it within months of diagnosis.

You have already been through a lot, but I suspect that it is too soon to say whether Ibrutinib has stopped working for you. Unlike FCR, Ibrutinib is a maintenance drug and it doesn't necessarily reduce the lymphocyte count to normal levels and if it does, it can take years. What's important is that the CLL is kept under control and your other blood counts (red blood cells/haemoglobin, platelets and neutrophils) are at healthy levels and your nodes are not growing.

An understanding of Ibrutinib resistance is being developed and the major mechanisms have been identified, so it is definitely possible in the USA to have your CLL checked for these DNA changes - or your specialist can continue to monitor you and if there are signs that you are developing resistance to Ibrutinib, switch you to another drug. The usual path for those that have developed resistance to Ibrutinib is to switch to Idelalisib, but Venetoclax is also a possibility, plus there are more options available via clinical trials.

You may need to be proactive and find a CLL specialist to arrange access to clinical trials, with Dr Sharman in the Willamette Valley Cancer Institute in Eugene Oregon close to you being one possibility: cll-nhl.com/ While CAR T therapy is a possibility, there are far less experimental options with quite likely better response rates available to you.

Neil

[pilantd in reply to AussieNeil]

Thanks! At this point I'm feeling really beaten down and depressed. Could be the Oregon Clouds and grey weather. Anyway, I'm grateful you reached out with other options.

I decided it was an oxymoron to say CLL is a "good" cancer. This disease has been so aggressive that my entire life is on hold. I don't know if I have 6 months to live or a year, 5 years or 10 years.

Meanwhile, my landlords announced they are selling the house I live in and I wasn't prepared for that reality. Especially when I feel my life is tenuous at best.

[maggiesgrandmom in reply to pilantd]

When I was sick I often felt that way. Will I be dead in months or many years. It is something many of us have felt. But the teatments are so good now, even for the hardest cases. It would be great if you could see another Dr. God bless you.

[Cllcanada Top Poster CURE Hero in reply to AussieNeil]

Two CLL specialist in the region...Dr. Tom Boyd in Yakima Wa.. and for CAR T cell Dr. Maloney at Fred Hutch in Seattle.

Your CLL certainly is like nothing I have heard of in 20 years of doing this... especially since your genetics appear to be indolent.

I had a terrible time on Imbruvica (ibrutinib), side effect wise, and switched to Zydelig (idelalisib) which has been great... there is also venetoclax available to you so there are many options should ibrutinib fail.

Sounds like you are having a turbulent time on a number of fronts, we are here if you need support...

~chris

[pilantd in reply to Cllcanada]

Thank you! Yes, the oncologist told me he'd never seen my CLL behave in this manner when the genetics are favorable.

[Jm954 Administrator]

I don't think you're going anywhere yet!

You don't say what your lymphocyte count is (it would help to know) but your lymphocyte count can still bounce around a bit on Ibrutinib.

There is a recognised clinical state called 'PR with lymphocytosis' where there are persistent CLL cells during ibrutinib therapy. Prolonged lymphocytosis during ibrutinib therapy is not associated with adverse progression-free survival. (bloodjournal.org/content/12... ).

You should remain on Ibrutinib and monitor this a bit longer to see if this is a blip or a trend in your lymphocyte count. If they are climbing then, as Murzik says, Venetoclaz is a very effective treatment in your situation. It's important that you stay on Ibrutinib until you start the Venetoclaz because, if you are becoming resistant, stopping it will lead to rapid progression of your disease. Staying on will retain some control.

Let us know, best wishes.

[pilantd in reply to Jm954]

For 2 consecutive months my absolute Lymphocyte Count has been above average. This past month it ticked up. My oncologist thinks I'm becoming resistant.

He asked me to become more disciplined in taking the mediation at the same time every day and making an effort to drink a minimum 64oz if water each day.

[Jm954 Administrator in reply to pilantd]

It is very important to make sure you take all the tablets at the same time every day to get the best response.

I realise you're having one of the toughest times possible at the moment with your health and the house sale but don't give up. Hang in there, have faith that life will get better and be good again in the future.

This group is always here to support you. Look after yourself and take care.

[pilantd in reply to Jm954]

Yes, I'm working on being more disciplined about taking it everyday at the same time and getting more water into my body. Thanks for the encouraging words. I'm really happy to have discovered this forum.

[maggiesgrandmom]

Boy, this has been a crazy journey for you. When Ibrutinib plateaued for me the Dr. put me on Gazyva and that finished the job and put all the numbers back to normal. Maybe that could be added in to your Ibrutinib.

[pilantd in reply to maggiesgrandmom]

Yes, this has been crazy. My oncologist and the oncology team at Oregon Health Sciences University have all scratched their heads. I'm glad to hear there are options other than Ibrutinib.

[newyork8]

Stay strong my friend. You have my support!

[BlueGillfisherman]

Greetings pilantd,

Hang in there ,at times when it looks bleak God can bless you. Praying you will find answers

[Bubnojay]

Hi philantd

Life is tough when it seems to be kicking you down on more than one front, just hang on in there and despite all, try to stay positive. Many here have gone through horrendous problems too, even if not mirroring your experience and will lend you their support.

Here we mostly monitor the ALC and not the WBC, it is a better indicator, it’s the lymphocytes that are the bad guys here.

Wishing you a turn around, keep the tabs to the same time each day and keep drinking the water no matter how boring.

Do keep in touch if you feel up to it.

Best wishes

Bubnjay1

[canadagoose]

You are 2 hours away from Seattle. Call SCCA. As everyone says, there are many things beyond ibrutinib. You are close to a cancer Mecca so take advantage.

[garrick66]

I am also an Oregonian with CLL, I see Dr Sharman in Eugene as well as another CLL doc up at OHSU, I figure two doc's is better than one plus OHSU is much closer to Beaverton where I live. I would never give up Dr Sharman, he is extremely knowledgeable in all aspects of CLL, I recommend seeing him if you can. I hope things start to turn for the better for you, seems like there are still some good options for you and very promising that you will still die of old age rather than CLL. I'm not in treatment yet still W&W for the CLL, although I did have to deal with a second cancer this year which is hopefully behind me. It's always something new and scary in the crazy world of being a cancer patient, life will never be the same but I try to just keep moving forward every day, thankfully I feel good and have a great family behind me.... best wishes to you.