THIRD SHOT BUT NO LUCK

[wizzard166]

This post is only to update many of you; since, I have posted a good bit about getting a third shot before it was approved. My first two were Moderna in January and then February. Recently I took, at my Immunologists recommendation, a different Vaccine than Moderna with Pfizer. I waited four weeks at the doctors suggestion and got the Antibody test at Labcorp. Oh well, as with the first two shots I still now show No Antibodies. What the heck is wrong with me?

I guess now I'm hoping I can somehow get qualified for the new shots that have been in the Clinical trial Dr. Koffman Posted about a few days ago. It was a Clinical Trial for Covid Antibody Shots, and the results were excellents. Supposedly one shot can last between 6 and 12 months, and it showed I think 77% Success with preventing death. I could be wrong on that 77%, but I believe I remember that from reading the report on the Clinical study.

So now my question from the more knowledgeable, including Dr Koffman, is if there is a way I can ask to be put on this new regimen; or, if it is still in further Clinical Trial studies. If so can I get into those late stage Clinical Trials

Carl

[Pin57]

Rats wizzard … was pulling for you bigtime on your #3 try, been following all your great posts.

Well that new shots DrK posted on HU is interesting (and provides hope). Let us know what more you find out about it and/or if you get in the trial.

In any case, hoping better outcomes come your way wizzard.

[wizzard166 in reply to Pin57]

I messaged Dr. Koffman about any possibility of getting into a continued Trial if there is more planned. If trials are finished, I don't imagine these shots are available until the FDA approves it. I also contacted my regular doctor and my new Immunologist.

I figure that I'm a sitting duck for death if one of these Covid variants finally hits me, so I'm really interested in trying to gain access to these shots. We'll see where this goes.

Carl

[LisaAlice]

Hi, same for me- two shots, no antibodies. Just had a third today. Fingers crossed. Xx

[Davidcara]

Had my third Pfizer yesterday. No side effects. Will post after my spike antibody test in a few weeks. Hoping something will happen differently from my last negative spike antibody test.

[WinJ3]

Sorry it didn’t work Carl. I had my third shot and will do a fourth soon to see if that works for me.

Don’t lose hope.....In case we do get covid, the monoclonal antibody (regen-cov) cocktail is FDA authorized for us and it’s very effective if we get treated early enough.

Win

[wizzard166 in reply to WinJ3]

Hey Win

It is comforting to know that monoclonal antibody infusions might be available, and maybe we can somehow get the ear of a person who could authorize it for us on time when we start getting sick. That is a bunch of ifs, but its better than nothing.

This is why I am reaching out right now to anyone who might enable me to get the new shot that has been in a Clinical Trial; the one Dr Koffman reported on a few days ago. That shot was proven to prevent death in 77% if the cases of Covid in immune system compromised individuals. The shot apparently is also showing it lasts from six to twelve months. Beats the you know what out of IVIG, which are infusions you take every three weeks (and which also currently do not include Covid Antibodies. The shot I'm referring too is specifically Covid Antibodies.

To any of us who understand the importance of either the Monoclonal Antibody Infusions, or of course this shot, it might be wise to do what I have begun to do for preparation. I am now seeing an Immunologist, and she is running tests on me which will build a case that I am severely immuno compromised. It is only logical that having had work ups like she is doing with me, should help prioritize me for either the Monoclonal Antibody Infusions or ultimately this new shot they are developing.

Carl

[WinJ3 in reply to wizzard166]

Carl, I will definitely check into the Clinical Trial. I hope I will get in, but be sure to check out this government site to locate a monoclonal clinic near you. It might be a good idea to have your Immunologist to pre-authorize you:combatcovid.hhs.gov/i-have-...

Win

[chirish in reply to WinJ3]

Thanks for that link, there's a clinic right down the road from me, that I would have never thought of. Nice to see some rays of hope every now and then...

[wizzard166 in reply to WinJ3]

I don't know if you saw one of my recent posts about the big company McGuire that in collaboration with various Governors has set up sites for Monoclonal Antibody Infusion. Those same sites are of course doing Vaccines and Testing.

Here is the link I put in that other post:

Hi Carl,

Welcome to the CDR HealthPro Community! patientportalfl.com/s/?lang...

Also their email: Email us at [e-mail]

Carl

[HopeME]

Hi Carl

I’m curious, how did you come to see an immunologist? When is it typically recommended that a CLL patient see an immunologist?

Best

Mark

[wizzard166 in reply to HopeME]

I went on the advice of my local CLL Specialist, because my Covid antibody blood work showed no antibodies after the first two Moderna vaccine shots.

The fact is that all of us with CLL have very reduced Immune Systems, and thus we all have a need to be seen by an Immunologist. I'm on Medicare, so I don't need a referral to see a specialist of any type. Since I'm on Medicare itself, and not one of those gimmicky Medicare Advantage plans, I also have no issues with In or Out of Network. If you read what I said tonight about building a case for being certified as severe immunocompromised, and your insurance doesn't prevent you from seeing anyone you want to see, you would do yourself a favor to book in with a good Immunologist and discuss what I'm suggesting. Get yourself certified as badly immunocompromised, so if there is a pecking order for receiving the limited supply of monoclonal antibody infusions you have an edge. It might save your life.

Carl

[HopeME in reply to wizzard166]

Hi Carl

I think your advice is sound. I’m not certain where I stand with respect to my vaccine success or failure. I’ve had 3 Pfizer vaccines but I haven’t bothered to get an antibody test since I’ve read of uncertainty surrounding how to interpret the results of these tests. What did your immunologist say about the potential of T Cells helping to fight a potential Covid infection? How did your immunologist feel about the results of your antibody test? Did he/she feel they are accurate tests? It’s all quite confusing.

Best,

Mark

[wizzard166 in reply to HopeME]

OK Mark here's the deal. You are walking around after two vaccine shots not knowing if they worked, which is not sound thinking. Now you take a third shot, without knowing if the first two worked at all, and still have no plan to know. In other words, go get the darn antibody test. You will need a physicians written order for the Covid Spike Quantitative Antibody test, and you want it done at Lab Corp and not Quest. Quest only says Yes or No; whereas, Labcorp is giving a full reading. My Labcorp was actually Less Than 0.4, and Less than 0.8 is considered not to be protected.

With respect to T Cells my Immunologist said that they can be part of fighting Covid. I asked how I'm still alive considering my failure to take full precautions a good percentage of the time, and she said it is possible my T Cells have protected me. We are also testing my T Cells to see where they are with respect to good numbers.

Any way you slice it Mark, we want to be able to get Monoclonal Antibody Infusions if we get a positive covid test or some symptoms. It must be done very fast after either indication. I'm more interested in the new Shot that Dr Koffman reported on a few days ago, but his report was about the result of a Clinical Trial. I follow Clinical Trials a bit for my technical analysis of stock charts (a strong hobby as opposed to my work), and I know there are first, second, and third stage Trials before it ever gets to FDA approval. That is why too I'm reaching out to ask if it is possible to get into the next stage of the Trials.

Carl

[DUKELAXDAD in reply to HopeME]

I would go get the Labcorp test, 164090,semi qualitative antibody test. Knowledge is power. You need to know. I just got my third Pfizer shot 8-12 and had my antibodies tested 9/20. I got the results the next day and I now have antibodies. It’s a good feeling.

The test is free with a doctor’s Rx. Otherwise it costs$10.

It is a blood draw. Very fast and easy.

Good luck!

[Davidcara in reply to wizzard166]

Wizzard, I’m wondering what kind of medication plan do you have. I do have a gimmicky Medicare Advantage plan. I have thought about changing but cannot get a sense of how much my medications would cost. Currently I pay $9 a month for my ibrutinib, and less for every other medication that I am on. Would change but I don’t want to mess up my medication plan.

[wizzard166 in reply to Davidcara]

Hey David

From the little you just told me, I guess you are either on Medicaid or what is called LIS; since, no one pays as little as $9 for Imbrutinib other than people with those extra help benefits. From the $9 amount I'd guess you are LIS level 2. Anyway your LIS status would follow you with any Part D coverage you ever change to. If you went to Original Medicare and a Supplement you would have to buy a separate Part D Rx plan also. In that instance the Part D plan you purchase would automatically provide the LIS level of pricing for all of your medications including Imbrutinib

The second part to this idea of switching however, is that with a diagnosis of CLL you wouldnt be approved by any Medicare Supplement; unless, you are still within 6 months of starting Part B. Everyone who goes onto Medicare, either at age 65, through Disability, or upon retiring, starts out with their first entry into Part B. The government forces a Medicare Supplement company to take you without regard to medical questions within the first 6 months on Part B. The other way you could qualify for a Medicare Supplement with no medical questions, would be if you have just entered for the first time your Medicare Advantage plan. In that case you have a 12 month right to leave the Medicare Advantage plan and force a Supplement company to take you with no medical questions asked.

I personally have Original Medicare with a Supplement Plan and a Part D Rx plan, and I've had this combination ever since I aged into Medicare in March 2012.

Carl

[Davidcara in reply to wizzard166]

I have a Medicare ( not Medicaid ) advantage plan. I had an employer plan, when I became 65 it went to a Medicare Advantage Plan My wife is my secondary insurance, which picks up part of my medication co pay. Even without my wife’s plan, the ibrutinib would be $23 a month, with her plan it goes down to $9 a month. Would like more freedom in provider choice but, don’t want to mess with my co pays. Plus, not sure how it would work with a pre-existing condition. Good thing is, I do like my oncologist and primary care MD.

[newyork8 in reply to wizzard166]

Medicare Advantage plans are not gimmicky. You can get a PPO plan and see almost any doc you want. The costs are lower and some include dental and eyes. Some have $0 premium Lots of people choose these plans for good reason. Thay are lower cost as well. People need to do their homework and compare.

[wizzard166 in reply to newyork8]

Hey New York

I'm not against Medicare Advantage plans, and feel they are right for some people and wrong for others. I do prefer Medicare Advantage PPO plans to the HMO plans, but for a segment of the population the HMO plans are the only sensible option. For the segment of the population with incomes and asset levels that are very low, the Dual Eligible plans are a life saver combining Medicare and Medicaid and frequently with more providers available that with strictly Medicaid and Original Medicare.

When I referenced Gimmicky, I was thinking of the TV Commercials that ran every ten minutes for six months from October to the end of March. "You may be eligible for benefits that Medicare doesnt give you" and the other one "you can get $144 a month back in your Social Security check, call now 1-800-...." It just reminds me of the TV commercials we used to see "and if you act now and buy the all in one tomato chopper, you will get Free the set of kitchen knives". Those are Medicare Advantage television advertisements, and I feel that we should be approaching our Senior population with marketing that emphasizes the parts of Medicare A, B, and D. Leading a Senior to switch their Medicare Advantage plan, or leave Original Medicare to take a Medicare Advantage plan, based on getting $25 a month to buy hand lotion and cough syrup etc, isnt the way I believe in educating them on what they need to go along with Medicare. And by the way the $144 a month advertisement references a plan that doesnt have prescription drug coverage. Its an MA and not an MAPD. There are plans that do offer lower amounts than $144 that do include Part D Rx, but that advertisement could end up hurting someone.

I realize that the extra benefits are nice to have, such as Dental and Vision and Over the Counter items and a free gym membership. My belief however is that each person helped on Medicare should be helped to evaluate what they truly need with Parts A, B, and D; instead, of leading into that educational process with enticement involving things that are not related to any of the Parts A, B, and D. Are all of their doctors In Network with an Advantage plan being considered, are their medications covered the best and at the lowest possible cost with the plan being considered. Yes its nice to get money toward a pair of glasses, or two free dental cleanings a year, etc. But focus instead on what they will need to access and afford the benefits from the actual Parts of Medicare.

Carl

[lexie in reply to wizzard166]

Too many make coverage choices based on CLL or one dominant illness. My late husband had Medicare Advantage which was fine until he needed a liver transplant. That changed the game. We were able to dump the Advantage for traditional Medicare and pick up the F Supplement. This was the only way we could do this financially and get him into a hospital which the Advantage plan did not allow. The switch allowed him to see a surgeon who had performed many successful transplants, not a pilot program that some hospital thought they would try out. From this experience as his caregiver when I turned 65 I looked at a larger picture with future potential issues and went for traditional Medicare. There was no question in my mind. I agree with all you say.

[wizzard166 in reply to lexie]

Thank you very much Lexie. The fact is that anyone who can afford to buy a Supplement and a Part D Rx plan, on top of the $148/month that Social Security takes from us for Part B (unless your income is well above average), should strongly consider Original Medicare instead of Medicare Advantage. This is my esteemed opinion, and I'd be happy in private messaging to go over my reasons. Once again I'm not against Medicare Advantage, believe it is the only choice for a large segment of our population, and do help many hundreds of people every year with Medicare Advantage.

[bennevisplace]

The mAb you mean is AZD7442, covered in this post healthunlocked.com/cllsuppo...

The study in which Brian Koffman, I, and some other members are participating is PROVENT, which trialled AZD7442 as a passive vaccine, to prevent infection, with very good results. Unfortunately, this study is no longer recruiting. clinicaltrials.gov/ct2/show...

I don't believe AZD7442 has an EUA yet, so the only way to access it would be in a trial. The latest stage of the ACTIV-2 trial is still recruiting according to clinicaltrials.gov though you'd have to catch the virus and then be randomised to one of four drugs being lined up for preventing severe Covid19 nih.gov/news-events/news-re...

Actually you'd probably be better off trialling Sotrovimab, another mAb, already shown to be effective against the Delta variant. Again, you would have to catch the virus first, but it would be worth investigating trial sites near you in case you do clinicaltrials.gov/ct2/show...

Sotrovimab is also available under an EUA.

And there's always Regn-Cov2, which I believe is widely available as a treatment in the US. Access via the link provided by WinJ3. This is a combination of two antibodies, only one of which is effective against Delta, so my personal preference would be Sotrovimab. If I could get it I would gladly pay $2,100 for a preventative shot.