My specialist, Dr Shou Ma, MD, PhD, of Northwestern University Hospital tells me to get every vaccination she recommends. This includes all four shots (had booster shot four days ago), the monoclonal antibodies) and Evusheld. I am approved for the Evusheld for next month. It is still hard to get in the States and is administered by most urgent need.
By the way, I had a strong reaction to the fourth (booster) shot. I had fever, deep aches and pains, joint stiffness, and headaches for 24 to 48 hours, and then it all disappeared. I have also had pneumonia, flu, and shingles shots as well. I had COVID on January 2, got very bad, barely able to breath to stay awake, and with Oxygen at 81% was taken to hospital and stayed there for eight days. While there I was given Remdesivir intravenous (about 90 minutes at a time) for five consecutive days. I came out the other side, okay. If the risk versus reward balance is fairly clear I am going for anything and everything. Hope this helps someone else on this site.
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Dr Ma is my CLL Dr. too. I got my Evusheld shots over a month ago at Swedish Hospital. If I waited for Northwestern to give them to me the pandemic would be over before I got them.
It sounds like you've been through quite an ordeal. I'm glad that you're on the other side of that now and doing well. May I ask the status of your CLL? Are you currently in treatment, W&W?
They took me off Calquence when I was in the hospital for COVID, then we decided I should stay off for a few weeks. Then I went back to Calquence. I have twice stopped taking the pill when my WBC was in the 6,000 to 8,000 range for a few months. Each time my WBC climbed back to 70,000 or so in six months. So they decided I cannot be W&W. Of course in the land of capitalism, buy buy and for profit healthcare, I will stop taking it the day I cannot afford it. With the best Medicare plan in this country, my out-of-pocket co-pay for Calquence is still about $1,150 (US) per month. Thankfully I am still working, but my retirement is modest and there is no way I can afford one drug for $13,000 plus per year. We will cross that bridge next year. For now, I have a beautiful day before me.
That's an outrageous copay, but at least you can afford it for now. Hopefully, after retirement you can qualify for one if the copay assistance programs. Thank you for sharing your CLL details. I'm hoping to get Evusheld soon, but am not having much luck convincing my providers that I deserve one of the precious doses. Stay well!
check with PAN, the drug company, and the various cancer and leukemia societies. There is copay assistance if not outright drug cost assistance. It won't hurt, and you will be established in their database for when your financial situation changes.
Thank you. I know how to fundraise and have done it very effectively for years. I have done so for myself and it works now and then. My key point is that seniors in America, actually no one in America, should have to scrape and grovel for healthcare that is life giving. It should not be a "who can pay" program at all. Germany has national healthcare, a country as sophisticated and modern as the USA will ever be, but it spends one-tenth on defense that we do. It is a matter of focus and priorities.
You’ve been through a lot. Hope you’re feeling well now. I’ve see Dr Ma for the past few years. I’ve also stopped treatment temporarily (not due to COVID though). I’m wondering how many CLL docs now allow their patients to stop tx. and have another watch and wait and if it’s beneficial for us or if they’re long term consequences. It’s likely there are no stats. I’m also considering a second opinion as soon as COVID declines more.
I think like everything else with CLL the outcomes are unpredictable. You seem to be doing fine and others have also had the same experience. But for some patients their disease starts to progress almost immediately upon stopping. Look at our own Jackie who stopped taking ibrutinib because her trial concluded after six years. Her disease quickly began to progress forcing her to start a new treatment. It seems to be random. I wish the consequences were more clear cut but that doesn’t seem to be the case.
Thanks Mark. Actually I’m exhausted again and sleeping more too. Like two years ago there are times I just have to lay down and sleep. I’d consider another w&w but I also V or V&O if it’s time limited (and for that reason).
I’m sorry to hear you are battling exhaustion. There are so many with CLL with the same problem. I hope your doctor or a second opinion doctor can help. I know you have traveled a rough road. Hang in there.
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