CLL watch and wait 3yrs, then spike after vaccine.

[Hugo51]

Hello,

I had been in watch and wait 3 yrs, but Oncology watching numbers for 5 yrs.

I had ok numbers in Feb 2021, but after both Covid shots my numbers tripled and I start treatment very soon. Is this coincidence? Bone marrow at 65%.

Thanks!

[Justasheet1]

Hugo,

Welcome to the forum. As this is your first post here, I would advise you to ask your hematologist about that. As anything is possible, perhaps a trained medical professional might know.

I have not heard of the vaccine causing a CLL patient to require treatment. Were your numbers trending up prior to your vaccines?

I’ve had three Moderna vaccines now and my numbers have remained stable but I’m not you.

Good luck and congrats on getting vaccinated.

Jeff

[Hugo51 in reply to Justasheet1]

Thanks for getting back! My white count has always been rising, but doctors said if they continued at that pace it could be years before treatment. After the vaccines, my lymph nodes tripled in size and my bone marrow went to 65%. Doctors are reluctant to judge the vaccine. That is why I joined this site to see if others had the same results. I had Covid arm for 17 days after the 2nd shot. Heaven knows what the booster may do providing they want me to have it with treatment approaching. Have a good day!

[Justasheet1 in reply to Hugo51]

Hugo,

So sorry to hear this. As for treatment, you are in good shape these days.

Jeff

[kc1953 in reply to Hugo51]

I have heard that the vaccines through their immune response cause temporary lymph node enlargement in CLL patients, but this is not related to disease progression from what I’ve heard and read. Haven’t heard anything on blood count impacts of vaccine. Talk to your CLL specialist.

[Hugo51 in reply to kc1953]

Thanks for your reply! Good luck to you!

[Farrpottery in reply to Hugo51]

Did you have an active case of covid prior to your vaccine? Just curious. Thank you

Farrpottery

[Hugo51 in reply to Farrpottery]

No, I have not had the virus. Hope it continues that way when going to the clinic for my treatment. More exposure!

[Farrpottery in reply to Hugo51]

My sister had a similar reaction as yours. She does not have CLL. Her doctor told her that she probably had covid the 10 days she was sick in 2020. She still had antibodies from her infection.

Wishing the very best for you at your Doctor visits.

My husband has been receiving monthly treatments since 2013.

Sincerely

Farrpottery

[whmk]

I don't know if it's a coincidence or not. I had the same terrible reaction after my second Moderna shot. I had huge nodal growth and deterioration in blood counts. I understand the sentiment that "Doctors are reluctant to judge the vaccine". First of all, there is really no scientific data - the vaccines were tested and approved excluding immunocompromised. Secondly, there is the tendency for the immunocompromised not to bad mouth the vaccines because the only way we can return to normal life is if more people get vaccinated and we reach herd immunity. So actually I think there is a restrained discussion of bad side effects of the vaccines on this forum. So I can sympathize with your frustration.

[Hugo51 in reply to whmk]

Thank you for your honest comments! Dick

[whmk in reply to Hugo51]

Good luck!

[LeoPa in reply to whmk]

I've read a few days ago that herd immunity is not possible with the delta variant. It is so infectious that even vaccinated people get the disease and pass it on. I can't say I'm not concerned about possible side effects of the vaccines. I still had no CBC since I was vaccinated. But fortunately I had no post vaccine symptoms. For me it was a necessity to choose between two bad options. On one side covid on the other side the vaccine. I would have preferred to get neither. However given the fact that sooner or later I will meet the virus I took the vaccine because I think that the possible damage it may do to me is inferior in comparison to the damage covid might inflict on my body. So I think I went for the least bad option. That's my reasoning why I took it. Others' might be different.

[whmk in reply to LeoPa]

Yes, herd immunity will be very hard with Delta - not impossible. Still, the mRNA vaccines are very useful to reduce the severity of the infections that result. Perhaps immunocompromised will be more forthcoming about bad side effects.

[LeoPa in reply to whmk]

Dr. Jamil says it's impossible. One of our mathematicians modeling the pandemic says it's impossible. I believe both are right. Not because I tend to believe anybody blindly, but logic says they are right too.

[whmk in reply to LeoPa]

Chickenpox is more contagious than Delta and it is no longer a global threat so don't be too pessimistic. But you are right in the sense that the immunocompromised cannot rely on herd immunity to save us which is very sad.

[LeoPa in reply to whmk]

Delta is more contagious than chicken pox,so I read. But for now it's probably all guess work. The bottom line is that we will not be able to reach herd immunity. We would need to vaccinate 90% of the whole world to reach that goal and that will not happen.

[whmk in reply to LeoPa]

popsci.com/health/how-conta...

[LeoPa in reply to whmk]

Thank you I haven't seen that one. So many experts so many opinions. Time will tell.

[kc1953 in reply to LeoPa]

Nope. It is somewhat less contagious than chickenpox.

[Hugo51 in reply to whmk]

Thank you for your reply! Dick

[Hugo51 in reply to LeoPa]

Thanks for your input! Dick

[1962jns in reply to whmk]

This vaccine is not a one size fits all.

[AussieNeil Partner Administrator]

Hi Hugo and welcome to our community.

For your reassurance, I recommend that you read through this post on the triggers for starting treatment for your CLL:

healthunlocked.com/cllsuppo...

With reference to what you've shared, the percentage of bone marrow infiltration is not one of the treatment triggers, with some of our members reporting infiltration percentages into to 90s when they started treatment. It's how well your bone marrow can keep producing blood cells with the remaining capacity. Specifically it's haemoglobin dropping below 100 (below 10 for some labs with a different reference range), or platelets falling below 100 (100,000 with some lab reference ranges).

With respect to lymphocyte counts, it's a doubling time of under 6 months when the absolute lymphocyte count is over 30. Even then, a good specialist looks for confirmation from other symptoms. In your case that might be swelling lymph nodes. There the treatment trigger is nodes over 100mm (4 inches) in the largest dimension or causing health problems due to their location. There is no lymphocyte count threshold trigger to start CLL treatment: healthunlocked.com/cllsuppo...

Its normal to have a temporary increase in lymphocytes when responding to an infection or vaccination, ditto swelling nodes. It's the trends which are important.

As you live in the USA, you are eligible for the free and excellent CLL Expert Access program for a second opinion cllsociety.org/cll-society-... It's worth it even to confirm that your oncologist has recommended the right treatment specifically for you. At the very least verify that you have had the appropriate testing and that your oncologist is using your test results to optimise that choice:

cllsociety.org/cll-101/test...

With CLL, we generally have plenty of time to get comfortable with our treatment choice, so if you feel you need more time, don't hesitate to ask if you can defer your start of treatment. Five years is around the median time to first treatment, but provided your platelets aren't significantly below 100 or your haemoglobin close to 10/100 and trending down disconcertingly, you should have time for a second opinion. It also gives you time to get any other vaccinations done while they should work better: healthunlocked.com/cllsuppo...

Neil

[Hugo51 in reply to AussieNeil]

Thank you for the abundance of information. I have flown to MD Anderson in Houston for a second opinion prior to Covid, and have been in touch with a doctor there. I also have sent him the information recently regarding the starting of treatment, and we will be holding a tele-health visit to get his concurrence. Dick

[AussieNeil Partner Administrator in reply to Hugo51]

Excellent! I'm very pleased to hear that. I'll be most interested in what your M D Anderson specialist advises. Would you mind sharing the numbers that tripled?

Neil

[Hugo51 in reply to AussieNeil]

I have no problem with that! The blood numbers are still good. Or at least in range. Multiple nodes increased from previous CT Scan from 3mm to 17mm, 5mm to 22mm, 6mm to 14mm, 6mm to 23mm, 3mm to 9mm, 8mm to 14mm, new 16mm and 13mm nodes. These are all in the chest area. In the neck area they went from 5mm to 8mm and larger. Enlarged pelvic nodes also.

Bone marrow is 60% involvement. It was my first marrow biopsy.

Dick

[AussieNeil Partner Administrator in reply to Hugo51]

Unless you have concerning symptoms, it's very unusual to have CT scans 6 months apart with CLL, even if you have the SLL presentation of CLL, where the cancerous lymphocytes preferentially accumulate in the nodes, rather than the blood. Maybe your oncologist is very good at picking up concerning changes in your node growth and you will need that treatment sooner rather than later. That second opinion just may confirm timing and treatment. Thankfully, modern treatments melt swollen nodes away rapidly.

Neil

[Hugo51 in reply to AussieNeil]

Thank you AussieNeil, that is good news. Dick

[Vlaminck in reply to Hugo51]

Must say, Hugo, your response got me wondering. You had 3mm nodes! That seems so small -- can you feel them? I bet I have a lot of nodes clearly more than 3mm. Don't we all? I thought normal for a lymph node was "pea size" which is probably more than 3mm, right? Never had a CTscan for this but coincidentally have been wondering because I think I have nodes right now that are more than 10mm estimated, and have been concerned about them although some tend to come and go a bit.

[Hugo51 in reply to Vlaminck]

That is interesting because both sides of my neck have been swollen for 2 years, without shrinking. I guess we are all different. Dick

[Vlaminck in reply to Hugo51]

Hugo, could you possibly be meaning your nodes are 3 cm, rather than 3mm which is very, very small.

[AussieNeil Partner Administrator in reply to Vlaminck]

Nodes are normally under 1cm in size.

[Vlaminck in reply to AussieNeil]

1 cm = 10 mm, well over the 3 mm Hugo was referencing, right?

[AussieNeil Partner Administrator in reply to Vlaminck]

We have around 600 lymph nodes, with healthy maximum sizes varying depending where they are found. The longest dimension is checked. This site gives a bit more information:

radiologykey.com/lymph-nodes-5

Dick's (Hugo51's) specialist was presumably concerned that the node size changes were indicative of his CLL becoming active, rather than concern with any of the node sizes. He reported his largest node at 23mm, just under an inch, compared to the treatment trigger threshold of 100mm/10cm/4 inches.

Neil

[Hugo51 in reply to AussieNeil]

Thanks for the website. I’m printing now. Dick

[Vlaminck in reply to AussieNeil]

Thanks

[Hugo51 in reply to Vlaminck]

Hello, I have 2.7 cm in pelvic area, and 2 cm in my neck. 17mm 22mm in my chest. All bigger after shots including 8mm in salivary glands. Been dealing with sore throat.

Dick

[LeoPa]

What was your ALC count before and after the vaccine? Do you have CLL or is it the SLL presentation?

[Hugo51 in reply to LeoPa]

I have B-Cell CLL/SLL. My number was 16.51 before and 24.65 after both shots. Dick

[LeoPa in reply to Hugo51]

First it has to reach 30 and then double within 6 months to indicate that treatment is necessary based on blood count numbers alone. And that's ALC not WBC.

[micg]

Although I am not watch and wait and under active treatment and it was going well - me to. I am now seeking different treatment. Coincidence - probably, but I found it curious timing.

[Hugo51 in reply to micg]

Your under treatment and your numbers still went up? Dick

[micg in reply to Hugo51]

yes. 3-4 months ago i was fine. Best blood numbers in years dr. told me. I had the disease for a long time and was on a combo Imbruvica and Venclexta for a year only. After vaccine, i went to checkup about a month or two later and Dr. told me i was progressing. I am now looking for a trial. Most interesting and depressing is how quickly i progressed after I thought I was ok for a while. Worse, cytogenics were totally changed from last time i checked and bizarre. For example, CD20 expressing was negative, CD 19 normal. FISH has changed as well. I just find it curious timing.

[Vlaminck in reply to micg]

Very concerning as we all want to be vaccinated. I am putting off getting third until I see if numbers went down after post-vaccination spike.

[Hugo51 in reply to micg]

I agree, it has to be more than circumstance. Dick

[micg in reply to Hugo51]

I would still rank this as a interesting coincidence. I am just one case and it is largely a tale of an anecdotal experience. But still wonder if there is a broader trend than just me and my hope is that people look at it. I believe given the level of my disease, the vaccine in relatively non effective so I am not sure if the booster would help me anyway. You might be totally different given the nature and stage of your disease. I don't know what I will do with the booster but your situation could be different. I tried to get Ivermectin but seems like it is difficult to get prescribed if I am honest with the Dr.s and my oncologist will not touch this Ivermectin notion of mine.

[DriedSeaweed]

Can you describe your covid arm experience more? Just had my booster four days ago and arm still aches. Lymph node in arm pit ballooned and is tender. Did not have this with my first two doses though.

[morepork in reply to DriedSeaweed]

If this is of any interest I had Covid-Arm after my second shot - a swollen area from injection site to my elbow - an oval shaped red raised area from about day 4 - very hot to touch. Was increasingly and almost unbearably itchy until about day 8 or 9 when it slowly subsided .

[DriedSeaweed in reply to morepork]

Yikes! I don't have covid arm then. This darn node under my arm is getting really obnoxious though.

[Hugo51 in reply to DriedSeaweed]

Hang in there! Dick

[Hugo51 in reply to morepork]

Many of these reactions sound familiar to other posts. Dick

[Hugo51 in reply to DriedSeaweed]

That is why the booster scares me! I had Covid Arm 17 days and red and swollen from shoulder to my elbow. Developed a dry cough lasting 2 months. Itching drove me nuts! Dick

[morepork in reply to Hugo51]

Oh boy do I remember the itching - though mine didn't last as long as yours.At lease it wasn't life threatening. It was classified by my dermatologist as a histamine reaction. It wasn't on the printed list of possible side effects at the time of my vaccination.

[Vlaminck]

Hi, hugo, my story is similar except not started treatment. Very low numbers for year and half (WBC only slightly over normal) then 2 moderna shots and, a month and half later, had appt with my onc and numbers had doubled in less than 6 months! But other measurements decent and doc scheduled next follow-up in Sept (4 months rather than usual 6) -- and I'm curious whether there has been any recovery. But given what I think was a clear rise from the vaccine (lots of people on here have reported this), I am putting off getting third vaccine until I see next month how/if I've recovered from vaccine spikes. Perhaps your doc saw other things as well as lymphs to warrant treatment. (never had bone marrow test). Good luck.

[Hugo51 in reply to Vlaminck]

Thanks for getting back! Dick

[Cfar]

HiSimilar happened to me too . Following second Pfizer vaccination my lymph nodes became larger in my neck so GP prescribed antibiotics "just in case" for a week they then reduced . ( I know now this is a common side affect from the vaccination and to be expected)

Following this my blood test showed reduced kidney function which progressively became worse and been on steroids since .

I'm now to start treatment for CLL

( O&V) next week.

Prior to vaccination my blood numbers were all stable . Consultant informed me if it wasn't for the kidney problem I probably would be years off treatment.

I've been on W&W for twelve months with 80% bone marrows infiltration.

Perhaps it's just a coincidence that kidney issues occurred following the vaccination but the consultants admitted "they just don't know" as no research to date but suspect that CLL MAY be driving the kidney issue.

I guess it will be some time before we will ever know.

[Hugo51 in reply to Cfar]

Praying for you! Dick