Going down hill fast.

[Flylikeabird727]

I was in remission a very long time 15 years. 3 months ago I found a lymph node in my groin. I Went for blood work and found out my white from 8.6 to 16. . Just went back last week to check blood white jumped to 17.3 platelets were 168. Now 120. Just trying to stay calm I'm just wondering when I start treatment doctor. said soon. Just hope for remission . Best wishes to all.🙏🙏🙏🙏

[HopeME]

Hi Fly:

Finding out our CLL is on the move is scary. I know as it’s happened to me twice. However, there are excellent choices at your disposal today, unlike when you underwent chemo. Further, you had a fifteen year remission from chemo. Wow. That is excellent and almost certainly indicates you have a favorable profile and will have another deep, deep remission from whatever novel agent/combination you select. Having cancer is terrible but you have the type of CLL that likely indicates you will die with CLL, not from it. If you haven’t done so get yourself to a CLL Specialist. If you are too far away from the major teaching hospitals where CLL specialists typically reside consider the CLL Society’s virtual second opinion program. It’s free!

Stay positive You will do fine. Your version of CLL is almost certainly highly manageable.

Best,

Mark

[Flylikeabird727 in reply to HopeME]

Thank you Mark for your reply. I'm at the Brand New Memorial West cancer institute in Pembroke Pines Florida I'm very lucky to be there. And I can't wait to start treatment with the new types of non chemo drugs I will be keeping in I am learning all over again my doctor doesn't realize just how much I know from all the people who are on this site.🙏

[SofiaDeo]

Please know that your lymphocyte count jumping is not necessarily "going down hill fast." It's when your platelets, neutrophils, and red blood cells are affected that are more important.

Since your platelets ARE dropping quickly, this means you likely need treatment soon. But if platelets drop "too low" there are a few things that can be done. My neighbor with CLL had his platelets drop to 20 a while back, he had some treatment, he's still around.

He's doing OK besides the post herpetic neuralgia from serious case of Shingles several years ago; he refused the vaccines.

[Flylikeabird727 in reply to SofiaDeo]

Thank you SofiaDeo I am going tomorrow to start getting all all my vacs.🙏

[SofiaDeo in reply to Flylikeabird727]

If you are anywhere near a convenient research site, please consider doing one of the trials. You can edit the location in the search field, see if there are any around you, and ask your doctor.

clinicaltrials.gov/search?l...

Just saw where you said you are at, these are the closest ones:

clinicaltrials.gov/search?l...

If you are willing to go nearer to Miami or further north, there would be more available I think. If you are seeing a local hem-onc, they can still be involved with your care, you can ask for bloodwork to be sent to them, I think. In case "something urgent" happens to come up.

When I was on trials, I asked my specialist to send labwork to my primary care doc, I am 70 miles away from my specialist.

[cartwheels]

Can't speak for everyone or consultant. But my blood have been rising consistently now for over 12 months now in the 20 s . I'm getting infection after infection constantly getting skin papuals face scalp chest and back . But I have no bulky desiese . No enlarged glands that I can see . My consultant is now watching me closely and talking about new treatment. Yet being in the UK I know they will wait until I'm really ill as that's how they work here. Not great but I sort of understand. It may be different for you but my point is slowly slowly is the message we get with CLL

All the best

[camper2 in reply to cartwheels]

Cartwheel I felt I had to respond- my UK consultant didn’t wait until I was really ill; he was guided by my blood works and me and all this was done through the complications of Covid. Perhaps you should look for a second opinion if you aren’t happy with your consultant’s decisions.

[cartwheels in reply to camper2]

Yes well it's crossed my mind, it's the horrible skin issues I'm having that really get me down. At first then blamed the COVID booster and it started then but 14 months on still getting issues not as bad as back then. And dermatology and heamotolgy are working together MDT but I have no answers other then it may be linked to my cll now and I'm getting closer to possible new treatment. I'm actually thinking of saying I'm going to stop ibrutinib which I have been on 7 years to see if this pushes them . They think not but I think ibrutinib might be part of the problem. Pred steroids cute it but they don't want to use other then a 10 day course when I get bad . So ether if it's my cll then please treat me as living with this skin issue is far worse then living with CLL for me .

[Jm954 Administrator in reply to cartwheels]

Drs don't generally wait too long to start treatment once relapse is established. Relapsed CLL can be more difficult to get back into remission.

Skin issues are common with Ibrutinib, perhaps see if your Dr would be willing to swap you to one of the other approved BTKi's and see if that helps. You've got nothing to lose.

[cartwheels in reply to Jm954]

Yes I'm going to push for something, I really ha e had crap service from the hospital now both dermatology and heamotolgy and I'm left not knowing what I should be doing. Jean said in December there may be a trial I can go on dep on my mutations I assume from ibrutinib,was to ill to make my Jan consultation and next one now put back till April 4 th . Had skin biopsy done as a urgent in January checking for lymphoma, luekemia cutis and lymphatiod papulisis but heard nothing. Last one in July which I did not get my results until late now said drug induced papuals then a week later changed to lymphatic involvement. Still no treatment offered as they wanted another biopsy 15 months this has been going on and in that time I have gone from stable bloods to rising every visit

[Jm954 Administrator in reply to cartwheels]

If your lymphs are rising then it might be a slow relapse and time to have another treatment anyway. You need to talk to your Dr, hope it goes well.

[MizLeelee in reply to cartwheels]

Hi cartwheels,I'm just chiming in to say I have a skin lesion (just one) that has recently been determined to be Lymphocytoma Cutis (not leukemia cutis). It may have been triggered by the COVID vax, by heat rash, or maybe by a bug bite or Lyme disease.

But it did take multiple pathologists looking at the biopsy, and some short-lived drama (hematologist seemed to think, for awhile, that I had lymphoma) to finally sort out what it was. They do believe it's connected to the CLL, though it's an unusual manifestation. I'm being treated for it now with a steroid cream. It turns out it's quite benign (it's even sometimes called "pseudolymphoma"). I hope they get to the bottom of what your own skin issue is, and that there's a good treatment available for it.

[Seaway789 in reply to cartwheels]

Hi cartwheels , I'm sorry to hear about your skin issues and that's exactly what I have happening. Just a week ago I started bruising. At my oncologist appointment my doctor looked at my hand I had a small spot. Yesterday I large spot on the same hand. Definitely from work anyway doctor said nothing but he saw it. I hope that your issues get resolved. 🙏

[Skyshark in reply to cartwheels]

Progressing on treatment is somewhat different to a relapse 15 years after prior chemo. Criteria for active disease is the same as for primary treatment. Lymph nodes are just one of criteria.

ashpublications.org/blood/a...

Active disease should be clearly documented to initiate therapy. At least 1 of the following criteria should be met.

Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. Cutoff levels of Hb <10 g/dL or platelet counts <100 × 109/L are generally regarded as indication for treatment. However, in some patients, platelet counts <100 × 10^9/L may remain stable over a long period; this situation does not automatically require therapeutic intervention.

Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly.

Massive nodes (ie, ≥10 cm in longest diameter) or progressive or symptomatic lymphadenopathy.

Progressive lymphocytosis with an increase of ≥50% over a 2-month period, or lymphocyte doubling time (LDT) <6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months; patients with initial blood lymphocyte counts <30 × 10^9/L may require a longer observation period to determine the LDT. Factors contributing to lymphocytosis other than CLL (eg, infections, steroid administration) should be excluded.

Autoimmune complications including anaemia or thrombocytopenia poorly responsive to corticosteroids.

How ill you are depends of which of the criteria are met. Lymph count and lymph nodes don't result in illness while anaemia and thrombocytopenia will.

[RosettaClapp in reply to cartwheels]

Not everywhere in the UK do they wait till you are really ill! That certainly wasn't my experience in Somerset.. The protocol for starting treatment is pretty much international and dependant of various factors which you should discuss with your haem team to know how they apply to you personally

[Seaway789 in reply to cartwheels]

🙏

[Katie-LMHC-Artist]

I’m sending you a hug and praying that your new path managing this illness goes will. 🙏💜👩‍🦳

[Skyshark]

Sorry to hear this. As you have reached 15 years remission from your 1st line it is highly likely that you are IgHV mutated, without adverse markers and considered "easy to treat". A 12 cycle short duration treatment with Venetoclax and Obinutuzumab should set you up for another ten years remission.

[Seaway789 in reply to Skyshark]

🙏

[Abernathy]

Sorry to hear your news.Fingers crossed your treatment starts ASAP.

Take comfort that many in this community have had multiple successful treatments.

Stay positive, keep smiling.

[Big_Dee]

Hello Flylikeabird727

Sounds like you have done very well and will continue the same. Blessings.

[Palmetto]

I don’t think so far you can be sure you need treatment. What is your lymphocyte count and hemoglobin? Also you are so close to Miami why not see Dr Alancar CLL specialist at Sylvester Cancer Center in Miami? Just because Memorial West is close I have not heard of it being well known for cancer. Even the Miami Cancer Institute is partnered with Sloan Kettering. I could also recommend my husband’s doctor Peter Citron there. He is very knowledgeable and really cares about his patients.

[Seaway789 in reply to Palmetto]

Thank you Palmetto for your reply. I pretty sure my Doctor is very good. His name is Yehuda Deutsch and he is young and very caring. He was taught at the U also and my first Doctor Lyle Craig Feinstein was taught at the U . Doctor Feinstein is the one that got me 15 remission.I appreciate your in formation you do have some very good Doctors at the U. I'm going to roll the dice my Doctor. That's same thing I told Doctor Feinstein 15 years ago about the treatment used. Thank you very much for Caring 🙏🙏🙏

[Jm954 Administrator]

Hi, relapsing after 15 years is very disappointing but, as Mark says, you most likely have a CLL with a favourable profile that will be very treatable. I'm glad you're making sure your vaccinations are up to date before treatment starts but I wouldn't wait too long before starting something.

Please don't worry about your platelets too much, you've only got two results which is not enough to be a predictive trend and they may have improved on your next test. Even if they are falling fairly quickly, you've a way to go before you need to worry about them.

I would definitely be wanting to have my 'markers' done so that I knew if I have 17p del etc and I'd want to know if I was IGHV mutated or unmutated. I would not however be rushing to find a clinical trial with an experimental arm of a brand new drug.

Some Drs would almost treat you as a 'new' patient after being in remission for so long and there are so many new, non chemo proven treatments for you to choose from. You would need to discuss those options with your CLL Specialist Dr but there probably isn't a bad choice in terms of a BTKi or BCL2 inhibitor regime, it may depend on any other comorbidities that you have.

I would be surprised if your Dr waited for you to fulfil the iWCLL criteria as they are still dealing with relapsed and perhaps resistant CLL as there is no knowing at this stage how aggressive it will be.

all the best

Jackie

[Seaway789 in reply to Jm954]

Thank you , Jackie and everyone else for your replys, that's exactly what I want to do is start treatment right now I am still strong and that's how I want to be at the start of treatment. Best Wishes to all . 🙏

[Jm954 Administrator in reply to Seaway789]

Good man, perfect response

[Flylikeabird727 in reply to Jm954]

Hi ,Jm954 Thank you again for your comment . Today I'm not sure what happened but my Doctor called me this morning . Now he wants to see me in Thee weeks not two months . Thank you.

[Jm954 Administrator in reply to Flylikeabird727]

That’s good, let us know what they say x

[Pinguin2024]

I hope for the best for you!