I had covid while on holiday in Canada on Boxing Day and had paxlovid and then rebound and finally tested negative day 16. Now 23 still sound like I have a cold so even though I’m negative I still have some symptoms. We have planned to go back in June to visit our son and family and go on a cruise for 10mdays. I’m just wondering if anyone here on this chat when they got covid for the 2nd time were they as bad as the first time. Everyone has been saying it isn’t as bad the 2nd time. Just want to know if that is the same for CLL people.
also does anyone know how difficult it is to get antivirals if you need them in America we will be going to alaska. I will have a letter from my doctor. We are not able to take them with us just in case. Just trying to be prepared if I’m unlucky enough to catch again.
thanyou in anticipation
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I think a lot of people with CLL do not take any risks second or third time they get it and take the medication that is available to minimise the symptoms so as long there is some medication available, theoretically you should be ok ...but you never know, do you. I definitely would not travel to a country where there is no treatment available once you test positive.
thanks poodle 2 I intend to be careful which is why I’m trying to figure out as much info before we travel that I can. I want to be sure I will be able to get antivirals seeing I’m not from america. If I can’t we will have to re think our plans. I was also wanting to know how expensive they are in america. It will only be for 10 days that we are in alaska. I will also check the ship we are on if the medical on board stock it also. Thanks again
We are in Honolulu. I don't know for sure, but I think you can get Paxlovid pretty easily in the U.S. right now. My husband (now age 74) has had CLL since being diagnosed in 2003. He was on Watch n Wait until last year. His oncologist put him on Obinutuzumab infusions and he has had 4 of those. He was just starting on the Venetoclax pill in addition to infusions when he got Covid for the second time on December 27th. His oncologist had him stop the Venetoclax while having Covid. He got Paxlovid immediately (like the first time), and he felt better within 6 days. He rebounded during his first time with Covid, and has rebounded again this time as well. However, this time "it" is hanging on much longer. He is still testing a strong, dark red positive line, and has a cough, stuffy head and fatigue. No fever (yet, on this rebound). We are now at three weeks in to when he first tested positive, with no end in sight. I am not immunocompromised, but I am not seeing really anyone outside of the house right now, as I'm afraid of picking up a cold or flu (especially from the grandkids) and giving it to my husband. It's really hard, but we are trying to make the best of it. I hope you are able to go on your trip and that you will have no problems!
thanks keikikumu are you from Honolulu not being American I’m wondering if it is still easy to get them. And are they expensive there. Interesting to know he got rebound again. It seems 5 days is not enough. I didn’t test negative till day 16 but still was congested and like I had a head cold. Still have cold symptoms day 24.didn’t get a fever on rebound with just congested upper respiratory. It certainly isn’t fun and I will take as many precautions that we can but I’m on watch and wait and want to be able to travel to see my son and grandson as much as I can befor I need treatment. Hope he feels better soon. Thanks again good to know others experiences people not imunocompromised just don’t get it they think it’s just like a cold especially the second time that’s why I wanted to know CLL experiences so I can be prepared.
not being an expert but knowing a thing or two… I have not seen any data indicating a second covid infection would have milder symptoms than a first infection in immune suppressed. I think some of it depends on the person’s vaccination status and the covid variant. I have heard some say, each covid infection can cause cumulative damage to a person. Don’t know if that is true but, seems possible
Paxlovid is pretty much the treatment in the USA. It is available but, not sure about in Alaska. Some take remdesivir, which can be a little difficult to obtain. It is three infusions, given on three separate days.
My advice, try to find some places in Alaska that have paxlovid before travel. Additionally, bring some good mask and rapid test.
Hi. I got covid Dec 17, a weekend of course, but was able to get Paxlovid on the 19th. On the 24th I tested neg. Yay! Then on the 28 started getting symptoms again and tested pos again. Was told I had to ride this one out without Paxlovid. The rebound wasn't as bad, but the congestion has drug on and on. I tested neg on the 6th, pos on the 8th and finally a final neg on the 11th. Still have some congestion though that gets a little better each day. At my 2 month appt yesterday I had a long talk with the pharmacists who said this is pretty normal for us immune compromised.
that sounds just like me I’m getting better each day but the congestion just hung on. The rebound does seem to be quite common for us. I wonder if we had the paxlovid for a bit longer if that would knock it out. But the general advice seems to be to ride the rebound out.
As far as getting medication in the US, I would think it is common knowledge that Paxlovid is easily available here. When I filled it recently, after testing positive and being sick on Dec 31, it cost me nothing. I am on Medicare, so I don't know what insurances for those under age 65 are doing, but on Medicare Part D my cost was zero. I'm assuming the government is covering the cost; especially, since they recently did away with approval for Monoclonal Antibody Infusions.
I learned that the FDA removed approval for the latest Monoclonal Antibody Infusion, when I called the local ER I had gotten them at previously on January 2. I was told that the FDA removed approval for these infusions because the currently used infusion was proving innefective against the latest variants. So I got the prescription for Paxlovid and started the five day course of treatment on that medication. I don't know if it was luck or if it worked, but within the five days my Covid reduced to near nothing. I then tested on the sixth day and was negative again. Then I re tested on day eight, and again I got a negative.
I had been sick for six weeks prior to getting Covid on December 31, but I had finally gotten well for a few days before getting sick again and testing for the Covid. The prior sickness was a cold with sore throat and then ear infections and then eye infections. This always happens to me every year at the same time, mid November, because my work increases a hundred fold for eight weeks of Medicare Annual Election Period. The intense work lowers my already very low immune system and I get sick. Then because I cannot stop working I can't beat the sickness until the end of December when I stop working.
So I was over the Covid and over most cold symptoms by January tenth. Now this Morning of January 19th I woke up with a head cold again. I haven't tested yet to see if it is a Covid rebound. I can tell you from reading a recent post like this one, that it seems most people who used Paxlovid to beat Covid then had a rebound. I didn't do the numbers from that post, which was within this past week, but my mind says about eighty percent had a rebound. From that post I'd estimate that about eighty percent of those with the rebound did not try a second treatment with Paxlovid, and almost all of those said the rebound was weak and went away in a small number of days.
Todays cold symptoms have me nearly depressed. I cannot accept that I'm now entering a phase of my road with CLL where I will get one infection after the other and need IVIG. I don't want to start IVIG (February 18 I'll be five years on Watch and Wait), because my understanding is that once you start IVIG you cannot stop it. To me going into a place for infusions once a month for the rest of my life is something I don't want to deal with. I guess if I can't beat this latest wave of sickness that started in Mid November, then maybe I'll have to consider it.
it sounds like paxlovid is available easy for residents Iam Just wondering if you are not an American citizen and the cost might be different if your not a resident also. I was hoping we would get to the stage of being able to carry our own supply of paxlovid but you re not allowed to access it unless you are covid positive. Good luck with your decision about the IVIG. I am still on watch and wait a relative newby and I don’t know much about the IVIG but wish you all the best with your health.
I got Paxlovid for free likely because I'm on Medicare and the government is apparently covering the cost. As long as you have a prescription, which you can get at any walk in Urgent Care place (probably a $100 visit cost for the Urgent Care place), you can easily fill it here at a pharmacy. I don't think it is very expensive, like maybe $40.
IVIG means Intravenous Immunoglobin. You get an infusion of Plasma containing Immunoglobins from healthy people with normal immune systems. It isn't usually a one time thing if you get sick, but rather a treatment for those of us who get sick frequently. Once you start it, I gather you must continue it. I think you go once a month to a place where they do the Infusions. I'm starting to get sick a bit more frequently, but then again I'm a risk taker who refuses to give up living my life the way I want to. I might need to start IVIG sometime in the not too distant future, and it has nothing at all to do with starting CLL treatment, but I am holding off until I feel I have no choice.
Hi Carl,I noted your concerns regarding IVIG and have similar thoughts. However, it is relatively common to give IVIG only during the winter months so continuous use is not always necessary. My CLL specialist advised me to consider this "winter" approach back in 2019 but I declined. Due to the tripledemic that this winter has become entrenched in, he told me to have 3 months of IVIG. Just had my 3rd infusion so will revisit the issue with him at my next appointment. I am thankful to have the opportunity to get this valuable treatment and that it is completely covered by my medical insurance.
I don’t know at this stage what I will do I know I will be nervous it will be my first cruise since covid. We used to cruise all the time before covid and we really loved it and have missed it. I cancelled a cruise we had booked before covid struck it was a long cruise from Hawaii to Sydney and thought the long time at sea and not knowing if I could get antivirals on the ship and the isolation was not ideal so we cancelled that. This cruise is only 10 days in alaska so it will be our trial. I. Assuming I will mask but just try and be as careful as I can. My worry is also if I do get unlucky enough to get it again over seas on the cruise we won’t be in Canada long enough for me to be well enough to fly home after my experience this time it took me 16 days to get to a reasonable state still congested but a 14 hour flight home I need to be reasonable health. We are still tossing up wether it is worth the risk after this last trip. But we really want to be able to see our grandson who is only a couple of months old. And his mother can’t fly to us for health reasons. I just am so disappointed that covid came along much less risk without the threat of covid hanging over our heads. I certainly will be selective on where we chose now to travel to.
Not sure what cruise line you are on, but for mitigating, I'd suggest booking a balcony cabin for daily airflow, booking any type of VIP/semi-private experience/skip the line stuff the ship has, avoiding any other lines you can (especially on arrival and departure), and sticking to most of the ship's outdoor facilities and activities on sea days and enjoying some of the ship's indoor facilities when the ship is deserted on port days, if you decide not to go into every port with the baby). Also, bring some elderberry/zinc/vitamin C/vitamin D vitamins to take daily.
Also skip all the bars and public restrooms, which will be germ bombs. And make use of room service (or paid dining) for evening dinner - the main dining room tends to be packed for the dinner hours, but can be pretty empty at breakfast or lunch, so if you want to enjoy a meal or two there with your daughter and grandson, those times might be best (and might be best with a baby anyway - heck, room service might be best with baby and will be best for you, too:)...
Last thing - stick to your normal daily habits. Don't stay up all night, don't skip your daily exercise, don't eat like utter garbage or drink a ton. Aka - be boring to your system.
(Oh, and skip the elevators and plan steps...especially after events - no need to wait in the scrum and be packed in like sardines).
My spouse wants to go back to cruising (which we also haven't done since my diagnosis in 2020), so I've thought a lot about this:)...we won't be cruising this year, but it's on our possible vacations for 2024/2025. I know I'm gonna start with a cruise to a driveable port for me and keep it relatively short (5-7 days), so I'm not having plane and cruise travel worry issues - just the cruise ones.
Hi we too loved cruising pre Covid it’s a great way to see the world. That is why I asked the question. You are doing the right thing getting all the advice you can in advance. We all have to make decisions about the risks we are prepared to take and in your case a newborn grandson is a must.I wish you a very happy holiday and a safe return home.
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