My TRIP TO NIH for Natural History of CLL Trial

[tekusa]

It was a three hour drive from Home to Bethesda MD. Appears I am progressing slowly, and after yesterday's appointment, my next appointment is Sept 14 2017 (one year away). Yesterday was first CT Scan for me. Swollen Lymph nodes in groin are between 2-3 cm both sides and all others are less than 1cm everywhere. No spleen enlargement.

Lymphocytes are now 39 K/ul up from 36 K/ul six months ago. The IGG are 769 mg/dl down from 843 mg/dl six months ago (steady march downward). B2 Microglobulin now 1.9 up from 1.7 six months ago. RBC 4.72 M/ul (always at that level since diagnosis) HGB 15.0 g/dl (always at that level since diagnosis) Platelets 211 (always at that level since diagnosis).

No B symptoms. Diagnosed with CLL Nov 2014. Sort of a Newbie! (((Mutated IgVH, No Zap 70, NO CD38, Ki-67 is 0, and karyotype us Normal Fish......all measured at OSU March 2015.)))

Truthfully I would like to knock my disease down, but docs will not treat low risk CLL patients unless there are symptoms. Not even for the early treatment front line trials.

Post if you know of one!

I Had a CT scan yesterday and found small irregularity with heart that I will need to check out. I think my (avg 3 / day) beer drinking has caught up with me! Or could be my father's family genetics are setting in. I exercise a good amount so I was little surprised.

My Dad has a defibrillator installed so when his heart beat gets low, the defib will send out mild stimulus to increase his beats. Dad, unlike me, is not a beer drinker, hardly ever. Instead he reads the Wall Street Journal front to back but no exercise. My mom, and her mom, are the ones with CLL, now me. "Mon Dieu" ..... Mom is cajun french, and she would say that all the time when I was growing up.

[Justasheet1]

Congrats on the good news. Long may it continue!

Jeff

[tekusa in reply to Justasheet1]

Aside from the heart thing found in yesterday's Scan.... Which I think might subside if I resist the IPA beer... which is so Yummy.... Is the IGG drop. Mom is always getting sinus infections.... And I am blowing my nose a lot in last three years. Yikes!

[Peggy4]

All sounding positive 😀

Peggy

[tekusa in reply to Peggy4]

Your right... Better than being asked to come back tomorrow!

[JoanneIO]

Thanks for posting about your experience with the NIH.

[tekusa in reply to JoanneIO]

Your welcome.... Probably should have spoke more on the interactions I had while there. Neil asked that I report on my one day adventure. I am not use to talking about myself.

Here is an interesting thing. After lying on the table and before going into the CT Scanner the technician asked if I wanted a blanket. So I said sure. The blanket was toasty warm when she put it on me. I liked that. They must have a warming rack of some sort.

[goneblonder]

All in all everything sounds pretty good.

[tekusa in reply to goneblonder]

I know a year before heading back to NIH. But I got myself into a triangle of doctor visits. I see Dr. Mato in Nov. and Dr Byrd in April. If I can keep the appointments spaced in one year intervals than It would be good I think! Hope you are well and enjoying married life!

[Dpop]

Congrats on moving to yearly visits. The same happened to me recently creating mixed emotions at first but soon realized it was a pretty good thing! Take care.

[Bubnojay]

Hi tekusa

Hope you soon get the minor heart problem sorted and that those two appointments go well.

Great news about the yearly appointment for your Cll, the longer we go untreated the better especially if you are feeling well.

Best wishes

Bubnjay1

[tekusa in reply to Bubnojay]

Hi Bubnjay1,

Everyone seems to agree it is better to wait. I exchanged mails regarding BTK inhibitors creating CRs over time. I wonder if you get started earlier in CLL progression if achieving CRs might be easier. I guess there are studies....

Best Regards

Tom

[kathyg]

I was dx in 2007 and I enrolled in Natural History Study in 2009. Great program, get to have the best cll doctors . I am still on w&w and doing good. I went in June and will see them next year. They did a CT scan in 2009 and things haven't change much. My spleen is a little bigger they can feel it now. Labs are stable. I am mutated IgVH, no Zap 70, no CD38, normal fish. Cll does not run in my family. I was 55 when dx now 64. When I was first dx I felt the same way wanted to do something to get rid of it. But now I realize mine is slow growing and it's ok. My husband and I ride motorcycles and enjoy grandkids. I hope this encourages you. Kathyg

[tekusa in reply to kathyg]

Hi Kathy,

WOW! Regarding our Labs.... We could be identical disease. I have the same exact prognostic indicators as you. I am so glad you responded to me. If I go as long as you without treatment that could be good, especially if treatments keep developing with less side effects. I will follow you on this site and see how you are doing. I know your journey could be different from mine with CLL but we have exact indicators.

I ride a motorcycle although not a lot. I need to upgrade my bike as I am still on the first one I ever bought. My wife doesn't like to ride, she is 66 and she wants to make it to 100, so she picks her adventures carefully. Tries to ride her bicycle on trails not roadways. That way no one can run her over....

Best Regards

Tom

[Claybuster in reply to tekusa]

I know I am replying to a post from 5 years ago, but I also have the same prognostics as you and another person on this page! I have a normal Karyotype, mutated at 6,4% IGHV. On w and w for about 3 and 1/2 years. White Blood Cell count is now at 54, when DX it was 15. Other labs all in normal ranges. For the first two years of W and W, My WBC count never went over 25. Last two years, they seem to be more aggressive. What has been your experience over the 5 years? I also go to Ohio State. I saw Dr. Byrd who has now left OSU---do you still see him? I like OSU but being 4 hours away cause me some concern if I need treatment or COVID help ie, monoclonal antibodies.Best to you.

[Claybuster in reply to Claybuster]

PS. Haven't been sick in 4 years! IGG in 2019 was 1295, IGM 85, AGA 150. How is your immune system?

[tekusa in reply to Claybuster]

Your imunoglobulin counts are way better than mine. Both IGM and IGA are below scale for me and IGG is low but it has been a while since tested, and might be low scale at this time. I don't get sick either. But I am careful about getting close to folks when indoors. I try my best to have fun,,,, which for me is exploring florida and getting outdoors.

[tekusa in reply to Claybuster]

Hi! I was diagnosed in Nov 2014 my WBC is now 125K. Hemoglobin at 13. My doc is watching that number. 3 weeks ago told me "See You Next Year". I live in Florida and since Dr. Byrd moved, I go to Moffitt Cancer Center nearby. My doc at Moffitt told me he would like to give me Venetoclax and Obinutuzumab as first line treatment. You have lots of time and treatments will no doubt improve over today's treatments. I exercise pretty much (retired) but not a fanatic. Now I have a thyroid issue and that is my recent watch item. So ageing has issues but doesn't look like the grim reaper is here yet. I'm 63 years old. 🙂

[Claybuster in reply to tekusa]

Thank you. It is helpful for me to talk with somebody in the same situation. Many of my friends are moving to Fla. I am 68, active, but probably retiring in March. It is now 14 degrees F in Pa! Stay safe

[tekusa in reply to Claybuster]

Burr 14F !! I left Reading PA on Nov 01 2017. My wife Pines for the space we had back home. Down here in the Tampa area, it is getting crowded.... especially now with snowbirds coming south. We might need to move to a larger lot space. We had 13 acres, but now a 1 acre lot with house in the right spot will do.... However....It is easier living in a close community with services and accessibility to stores.

[Claybuster in reply to tekusa]

Tekusa I am in a similar situation. Have a great home with a 1 acre wooded lot, dead end street. Yard work getting to be a lot ( like you I still do a lot). Wife loves the house and location. Doesn't want to move.We shall see. Stay in touch regarding your CLL Journey!

[Justasheet1 in reply to tekusa]

tek,

Just an fyi; prior to starting ibrutinib and my numbers climbing, I developed Hashimoto’s disease.

The endocrinologist did all the tests and I needed to start on thyroid med as my thyroid was pretty much not working.

Fast forward a year and CLL under control because I started on ibrutinib , the thyroid began working perfectly and they stopped the medication. That was about two years ago now.

They think that the CLL was the culprit.

Jeff

[tekusa in reply to Justasheet1]

Thank You Jeff! I was thinking just that. Hashimoto’s disease related to the CLL. I just picked up 25mcg levothyroxine. Primary Care Physician prescribed. I did see endocrinologist and she told me Hashimoto's is likely the reason. Primary Care Physician wanted to give me 50 mcg but I wanted to step into this slowly. I get Premature Ventricular Contractions sometimes, so go slow for me....

The good information from your message is stopping the Levothyroxine once ibrutinib commenced. I was hoping for that......👍

[Justasheet1 in reply to tekusa]

Tek,

I began on .25 mcg and was increased monthly after testing the levels till I got to 1.0 mcg.

I stayed there for about a year and then after testing they needed to decrease the dose. That coincided with ibrutinib treatment.

Then over the next few months they knocked it back.25 until I now am off it completely for two years.

I’m still tested annually but feel great. This had all my doctors except Dr Wierda at MDA scratching their heads.

I hope that this might be the case for you.

I never see you on the forum anymore and was glad that you replied to this very old post of yours.

Jeff

[tekusa in reply to Justasheet1]

Well I stopped coming to the forum(s) because I wanted to take a mental break from thinking about the CLL. I don't tell anyone in my new community that I have it since they wouldn't have an appreciation on how controllable CLL is now a days. But I will share my experiences with persons that ask, as that is important!!! And I appreciate you sharing your experience with your Thyroid..... Thank You!

[tekusa in reply to kathyg]

Hi Again,

I told my wife about your experience with CLL (you having same markers as I do) and she asked how your Immune system is. Is your immunoglobulins low? Do you need IVIG or maybe you don't get sick? Not sure (my biology not as good as Neil's or Chris's) but maybe despite low IgG, IgM, IgA your T cells pick up the fight and you don't get infections. Sorry if this question is private and I am asking in a public forum.

Regards

Tom

[kathyg in reply to tekusa]

I ride a 535 Yamaha and we have been all over North Ga. mountains. Your wife asks good questions. My immunoglobulins have been dropping and I have had IVIG but it didn't stop my sinus infections, so I am not taking anything now. I have not be sick with an infection for about 4 months which is good. I get tired sometimes but we are still active. Which doctors did you see at the NIH? My favorite is Dr Marti. I am glad that you know about cll. The information helps you understand what the doctors are saying and you can ask questions. I like how understanding cll gives me confidence in my doctors and myself.

[tekusa in reply to kathyg]

Hi Kathy,

I have been to NIH twice. Last March I was seen by Dr. Farooqui. He is now in Philadelphia (near me) working for Merck. Yesterday Sept 15th I was seen by Dr Ahn. Both doctors have an excellent "bed side manner" if people still say that. My NIH Physician Assistant..... who follows me closely, and has seen me on both my visits, is Jennifer Lotter. She is extremely nice as well. All very good people. Top Notch!

I have a question for you......When you received IVIG did you get it at NIH or at your local Hematologist. I don't even know if NIH would administer IVIG, that's why I ask. Dr Farooqui told me if I get sick I should go there to the NIH, and with the expertise and no bills to pay, why not. Just wondering.

Oh.... I have a Kawasaki Ninja. I am embarrassed to say it is a 250 CC. A beginners motorcycle. If I do buy a replacement motorcycle I like the Honda Shadows. They are pretty reliable (I hear) so I would do that. But since I just retired a month ago, we are trying to figure out our spending habits. I put all our spending onto a spreadsheet, now we want to give it a little time to see how accurate we predicted. I am 58 years old.

Best Regards

Tom

[kathyg in reply to tekusa]

My husband has a 1600 Kawasaki which is big. Any size bike is fun. My 1st time was 2008 and my hematologist did it, 5 months. Last time was last year and Dr Marti from NIH wanted me to have it because of all my sinus infections. Also my IgG was 678. He contacted my hematologist and she wrote out the script for it. I was under her care. But when I went in June 2016 the doctors decided it wasn't really working so I stopped it. I had the IVIG shipped to my house . A nurse taught me how to subcutaneously inject it . I did that every week for about 6 months, until I stopped. I liked Sub Q because I could do it at home when I wanted to. Kathyg

[KellyM]

tekusa and kathyg; I have the same markers as you all. I was diagnosed at 38 because of an enlarged lymph node in my neck (doctor didn't think it was anything but I was persistent). You all give me hope; I know everyone is different, but if I can get years and years on watch and wait then I'll take it! Dr. Byrd has me on yearly visits and I see my local Hematologist every six months.

[tekusa in reply to KellyM]

Hi Kelly

So Cool! We three have the same markers. I will follow your posts as well. Maybe in the future we can compare experiences. I see Dr. Byrd too. Last time I was there (April 12 2016) his physician assistant (Dr. Byrd's assistant) joked that when I would need treatment in 20 years treatments will be better. We laughed.

Best Regards

Tom

[kathyg in reply to KellyM]

Glad to see that your cll in slow growing. I see my Hematologist yearly and the doctors at NHI yearly, so every six months I am being seen.

[KellyM]

Tom,

I hold all of the doctors, assistants and nurses at OSU in such high regard; they are fantastic! I was there on March 29, 2016 and will see Dr. Byrd again next April. I will follow you as well and would be happy to compare experiences; hopefully, there won't be much to talk about in regards to our CLL. I think boring is good news in CLL

Take care!

Kelly

[tekusa in reply to KellyM]

Your right Kelly.... Not having much to add to the forum regarding our disease would be a good thing.. I am also working on my understanding of the developing science surrounding CLL and Next Generation Sequencing. It takes plugging in to different forums sometimes..... although many are crossing forums with same information. Repeating information on different forums is good so we don't miss anything and so we don't have to stay plugged in (can do other things than focus on CLL). PD-L1 inhibition and CAR-T both for use in CLL get my attention. I haven't seen much on ROR1 inhibition and wonder what is going on with that since being sold to pharmaceutical concern. If your not careful you can miss this information.

Best Regards

Tom

[goneblonder]

How have you and your Mom been over the summer...I can't believe its Nov all ready. The weather is still good so far...Im happy about that. Im good just had a short flu..lol I posted about it and new blood work...still staying about the same...but having a small scare with the xray find. I will be glad after the cat scan so I know what Im dealing with.

[tekusa]

Sorry to hear about the flu. But having a short flu is a good thing. The CT Scan I had in September showed my CLL is still good, although the Lymph nodes are small but plenty. This watch and wait works on my psyche. I wonder what the German CLL group is finding with early kinase treatment (no watch and wait). Seems to me you would get more CRs with a TKI if you started early in the disease. This whole W&W started with Chlorambucil studies in the 1980s and hasn't been revisited. No doubt there is more to the story than I know.

Summer was good. Bicycled a lot as you know. Also I retired August 20th. Little early (age 58) but I was saving long time for early retirement. This week I found affordable plane tickets to Tampa ($87 round trip), so planning a getaway mid December. I have a folding Brompton bicycle that checks in as normal size luggage. I will bicycle in sunshine in Tampa. My Mom and Dad live there so they will give me a room for the week. Best wishes on Xray scan. My CT scan showed an enlarged heart, so went to cardiologist for follow up testing which I have not discussed with cardiologist yet. Found out I have premature ventricular contractions (PVC). But this might be insignificant I am told by my PCP. Much more worried about the CLL than with PVC. That is until the cardiologist tells me otherwise.

[tekusa]

Oh! Moms doing good. She discontinued Ibrutinib (intolerant not refractory) and is now on zydelig (idealisib) and Rituxan. She claims to be feeling much better, but it has only been a couple of months. Her platelets are increasing (now 140 from 100) and all other blood work is normal. It was a tough ten years with lots of FR (not FCR) and when ibrutinib was approved her situation went from near tragic (refractory FR) to Wow on Ibrutinib. But she was getting sick all the time after starting Ibrutinib, (which I thought was lasting affects from the chemoimmunotherapy), but she switched (after 2 years on Ibrutinib) even despite her Hematologists reluctance, and is for now doing great. Guess Dr Anthony Mato's research (data mining) shows good success switching TKIs when intolerant by the other brand. ie BTK to PI3K. I know we are better off now than 3 to 5 years ago, but how much better will we be in 10 years. These new inhibitors still needs sorting. (my brief rant). Best wishes on your CT scan.