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How has the Pandemic affected you as a cancer patient/survivor

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  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Instead of pushing boosters for the general public, I would prefer delaying second doses for the newly vaccinated. There's enough data showing better immune response when delayed 6+ weeks. This may reduce or delay the need for future shots while giving more first doses with the limited supply of vaccines.


  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Moth, I've been watching closely on the third dose for the clinically vulnerable as well. I watched the PHO present and yes, the first tranche is for about 15,000 who are severely immunocompromised. That surprised me, particularly when she said that they were still "studying" the situation with the moderately immunocompromised, anticipating they would have a decision by the end of September or early October. The media read that as we would get the third shot then.

    It's darn frustrating. It's pretty clear that things are progressing in my liver again so I'm feeling time slip away somewhat. I would prefer to be able to step out of this bubble at some point!

    Interesting discussion on access to vaccines. As someone who worked in international development for many years, I have a problem using a broad brush approach to say that developing countries can't manage a vaccine program. I would agree there are some parts of the world where it would be challenging but many other countries would be able to implement a strong response if they had adequate access to vaccines. Regardless, we have a duty to ensure that ultimately, everyone has access. And WRT the political debate, I would say we have seen a LOT of bad behaviour from politicians around the globe. The best and the worst indeed...

  • latte123
    latte123 Member Posts: 31
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    HI Beesie! I note your comment "I was merely stating some facts about vaccine distribution and U.S. policy that most Canadians knew but apparently most Americans did not." I am not sure if you are intending this, but don't use my questions as an indicator that most Americans don't understand US policy. I was really asking the questions to understand more precisely what your arguments were. I am well schooled in American imperialism/dominance in its many forms historically and today. However, I am working on trying to understand (listen carefully, set aside immediate judgement) people's perspectives rather than jumping to conclusions. This is part of my overall effort to improve my discouraged attitude and live better and look for solutions in a country that elected Trump, harbors many anti-vaccine nut cases, had an insurrection, is rife with racism, etc. I am writing this response because I don't want to provide you with perhaps a mistaken example of American lack of understanding of the world stage and America's place in it. And to be clear, my feelings are not hurt at all by what you wrote and I respect your perspective. I don't mean this as a critique at all, just a clarification that makes me feel better. Peace and good wishes to you!

  • minustwo
    minustwo Member Posts: 13,189
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    wrenn - now wouldn't that be amazing. And would we have to track the correlation by hormone positive vs negative? Or HER2+? Or ILC? Thanks for the chuckle.

  • trishyla
    trishyla Member Posts: 698
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    There is thought that there may be a correlation between intelligence and depression, which makes sense. The more intelligent you are, the more likely you are to see and react to complex problems and issues. When you're less, shall we say, gifted, you tend to see life in simpler terms.

    Or as my friend, Amanda, used to say: "Gawd. I wish I was stupid,. It would make my life so much easier". I'm glad she wasn't.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Well then, that's good. The more all these treatments affect my brain and make me stupid, the better off I will be.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Cancer giving us the gift of blankness!

    Anyone in Alberta? They declared the pandemic over and had a great summer. Playtime is over.🤦🏻

    image

  • trishyla
    trishyla Member Posts: 698
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    Wow. Sorry to hear that, Serenity. It seems like this is going to keep dragging on forever. It's tough for everyone, but especially hard of anyone dealing with a serious illness.

    I had two friends, both of them young, die of cancer during the Pandemic. They both had to spend their last days isolated from everyone except their husbands. That makes me so sad.

  • trishyla
    trishyla Member Posts: 698
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    I hear you on the treatments affecting your cognitive abilities, Shetland. I tell people, only half joking, that chemo ate my brain. Maybe a little humor?

    WHEN YOU DIE, YOU DON'T KNOW YOU'RE DEAD. ALL THE PAIN IS FELT BY THOSE AROUND YOU. SAME THING HAPPENS WHEN YOU'RE STUPID.

    Trish

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Trishyla - I'm so sorry for your friends. This pandemic just keeps going and makes everything worse. Alberta reveled in having a summer without restrictions. Now they're asking other provinces to take patients and send HCWs. They've cancelled surgeries. Their healthcare system is failing. Now they're asking people to get vaccinated and wear masks. 🤬

    https://edmonton.ctvnews.ca/alberta-has-reached-ou...


  • trishyla
    trishyla Member Posts: 698
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    I don't get how they could be so remiss in planning ways to keep their citizens safe, Serenity. Are there no professionals in that particular provincial government? Or were they ignored the way our federal government ignored the public health experts under Trump? Either way there's no excuse for putting so many people at risk. It makes my blood boil.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    You beat me to it wrenn... Winking

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Trishyla - The people in charge of Alberta are the ones in disaster movies who don't listen to experts (Quebec is the same). Before the pandemic they were cutting healthcare and education. Their decision-making did not improve during the pandemic. Now people with one foot in the grave are getting shoved into them. Hello triage protocols. ☹️

  • chisandy
    chisandy Member Posts: 11,407
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    It's a rural thing--on both sides of the border "rugged individualism" runs rampant, especially in mountain/prairie states & provinces. I will give the example of my own state, IL It's a "tale of two states." Here in Chicago & its "collar" suburbs, first-shot rates exceed 72%, with full vaccination at or above 2/3. Many city & suburban hospitals' ICUs are half-to-2/3-full, with half the ICU beds currently occupied by heart, stroke & trauma patients. (A couple of ghetto-barrio hospitals are at or nearly at capacity, however: Mt. Sinai, which serves a primarily Latinx area, is currently at 104% capacity; UIC Hospital in the Medical District--where my husband did his residency & fellowship and I am treated for ocular melanoma, is at 98%--but because it's a university research hospital and trauma center it treats more complex critical care and post-op patients and has only slightly more COVID than other critical ICU patients--especially overflow gunshot patients from Cool County Hospital).

    But downstate--especially far-southern--IL might as well be the Deep South, not Midwest. It's solid red Trump country (except for African-American E. St. Louis). The 22 southernmost counties have exactly ZERO ICU beds available--and only 17% of its residents have gotten even one shot. The statewide indoor-mask mandate is flouted down there, as were capacity limits for restaurants, bars and churches since the pandemic began.

    I never said, BTW, that there are any countries that "don't deserve" vaccines. Stop reading stuff into my posts that simply ISN'T there and was never even implied.

    As to Astra-Zeneca, the US has yet to approve it. The only Americans who got that vaccine were those enrolled in university-based trials which have since concluded (I know because I was disqualified due to my melanoma). NO boosters given to nor destined for the elderly & immunocompromised are Astra-Zeneca or any other viral-vector vaccine--only Moderna & Pfizer. If the US is hoarding Astra Zeneca, it's emphatically NOT the fault of those seeking boosters!!!! Blame those controlling the AstraZeneca supply, as well as the COVIDiots causing mRNA and J&J vaccine doses to spoil and be discarded.

    Back at the dawn of mRNA vaccines in the US--even here in the Chicago area--getting a vaccine (even first shot) was like the Hunger Games. The politically-connected (especially GOP) and hospital administrators were hogging the doses when those in hard-hit minority 'hoods (even those where those corrupt hospitals were located) couldn't get them. My husband's hospitals at first wouldn't vaccinate anyone not working directly in COVID ICUs (whereas the ones in wealthy Streeterville were vaccinating families & friends of the top brass and even retired docs). It took nearly a month before one relented and agreed to vaccinate active medical staff. As for me, I had to wait till my age group and underlying-risk-status class became eligible--and I had to register with several agencies, hospital systems and pharmacy chains before I could finally score an appt. Appts. opened at midnight and were gone 10 min. later. This went on for several weeks. I had to keep refreshing Walgreen's site and clicking on an ever-widening radius of available sites until I grabbed one in a suburb 20 miles away. (My housekeeper, who lives within a mile of one of the aforementioned minority-community corrupt hospitals, had to travel 35 miles nearly to Will County). When the time came and I got my shot (in a blinding snowstorm), they refused to schedule my second one--they told me to go home and go back online. By the grace of God I was able that week to schedule my followup...at the same suburb, and again in a snowstorm. Two months later there was finally enough to go around--but by then the QANuts and COVIDiots had begun to do their social media dirty work.


  • beesie.is.out-of-office
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    ChiSandy,

    I'm not sure if you are referring to my comments, but since I'm the one who's mentioned AstraZeneca more than anyone else, let me clarify that my comments about the U.S. hoarding AZ supply, even though the AZ vaccine has never been approved in the U.S. but has been approved in Canada, Mexico and most of the world, was specific to the period when everyone was scrambling for 1st and 2nd doses, back in the March - June time frame.

    I know that AZ remains unapproved in the U.S.. and is not being given out to anyone, and specifically is not being given out to the elderly and immunocompromised who are seeking boosters. I think boosters for this group is important and should be prioritized. In both the U.S. and Canada, those boosters are only Moderna or Pfizer. My 97 year old mother who has Alzheimers and lives in a LTC residence got her Moderna booster a couple of weeks ago.

    At no point have I blamed any vaccine recipients or those seeking vaccines/boosters for the vaccine distribution mess. The issue that I described lies with the U.S. government, which mandated that orders placed by the U.S. government be filled first, before orders from any other countries, for any vaccines manufactured at any U.S. facility. So while the government did not stop these companies from shipping vaccines to other countries, by flooding these companies with orders, they in effect did the same thing because all those U.S. orders had to be filled first. Now, to be fair, all countries had placed their orders on spec, months before any of the vaccines were approved - so no one knew which vaccines would make it to market and which vaccines they would receive. This is why so many orders were placed; all countries were hedging their bets by ordering more than they needed from many different companies. This is why the U.S. had placed orders on AstraZeneca - they placed those orders before they knew that they would have sufficient supply of Moderna and Pfizer and before they knew that they wouldn't even be approving AZ. What is astonishing however is that during the March-June time period, when other countries were scrambling to get any vaccines they could, Biden (or his representatives) didn't cancel those AZ orders, or put a delayed shipment date on those orders, or exempt AZ from the mandate that U.S. orders had to be filled first - and Biden obviously knew what was happening since he eventually "loaned" some of those about-to-expire vaccines to Canada and Mexico. That was irresponsible and on a global basis, probably cost lives. If AZ could have ramped up production in the U.S. and shipped to anywhere in the world, more people would have been vaccinated sooner.

    The fact that things have settled out and that the U.S. (and Canada) now have enough supply to donate lots of vaccines and lots of money to COVAX does not change what happened earlier in the year, when it was 'everyone for themselves' and 'survival of the fittest' (or more accurately, the biggest and most powerful). As moth said earlier, hopefully everyone has learned from what happened.

  • chowdog
    chowdog Member Posts: 190
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    https://twitter.com/boulware_dr/status/1438915110978863105?s=21


    meanwhile fda booster meeting seems to be a $hit show now.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    ChiSandy -

    1) No one in this thread has blamed individuals for getting boosters. The elderly and immunocompromised benefit from them.

    2) True, you didn't use the phrase "don't deserve". Your post seemed to say that vaccines shouldn't be sent to developing countries because they would be mishandled or used by corrupt officials. The phrase I used was a benign reading.

  • latte123
    latte123 Member Posts: 31
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    I often wonder about the lens through which we view Covid. For me, I am very frustrated and angry at the limitations to my already shortened life (stage four) because of lower than ideal vaccination rates. However, I am retired and I am fortunate I don't have to work to pay bills. I have truly been privileged to not have to go to work everyday over the past 18 months. Some women with my diagnosis have to work to pay the bills and often to maintain their health insurance to pay for their breast cancer treatment. Some women do qualify for Medicare through social security disability, but it takes 5-6 months of being unemployed before you get your first disability check and some women do not have the savings to support themselves that long and can't consider disability because of that. They keep working. If one is able to retire on social security disability, there is still a two year wait to qualify for Medicare. All of this means that some women with breast cancer (especially younger women I think) really have no choices. They face many hardships as providers for their family, caregivers for young children and more while dealing with side effects and pain management. This is heartbreaking. We desperately need systemic change in the U.S. to address these issues.

  • illimae
    illimae Member Posts: 5,649
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    Latte, I totally agree about the struggles, especially by the younger women. I was 41 when diagnosed and had I not had a government career with a medical retirement option and short/long term disability programs, I’d likely be dead by now. The disability paid me while I waited for SSDI to kick in and continues to until death, I also have insurance as a retiree. If I had been in industries like retail or restaurant service, I’d be screwed by the lack of benefits and need to continue working.

  • lillyishere
    lillyishere Member Posts: 775
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    Makes me sad how this virus was thrown on us not only to kill but to create hate, fear, depression rates are over the roof and I won't let this happened to me. I am fully vaccinated but I don't judge my friends who aren't for different reasons. I also don't judge my co-workers and friends who are fully vaccinated and got very sick from covid. This vaccine is far from perfect and that's why I keep the mask on all the time when I'm around people.

    In a personal matter, covid lockdown started 2 weeks after my 3rd surgery (I had 3 major surgeries in less than 4 months). I was exhausted and I was going to work between surgeries so the work would be done by me and not passed to my co-workers. I didn't know at that time what a big mistake it was until covid hit and we stayed home. Then I realized how much I was doing. What I did at beginning of covid lockdown is I slept a lot, 8-9 hr/day, I eat well, I took care of myself and my family, I spent time with my young kids I never had time before. So, looking at the silver lining, in my case it wasn't all bad.

  • alicebastable
    alicebastable Member Posts: 1,946
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    ChiSandy, the town I grew up in in SW Illinois in Madison County is pretty blue. And driving through EXTREMELY rural Calhoun County last fall we saw a lot of Biden signs and very few Trump ones. Other places we've driven through on our frequent central-to-southern Illinois day trips have been a mix. Maybe actually visit those areas instead of throwing shade based on urban elitism?

  • chowdog
    chowdog Member Posts: 190
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    fda just voted against the booster. 16 out 19 members voted no booster for those >16. The question voted on was if Pfizer had enough safety and efficacy data to justify booster for those > 16.

    Not surprised. The whole us pandemic response seems to be "playing catching up" and "not collecting ng data". Probably why we will never get out of this.

  • cm2020
    cm2020 Member Posts: 530
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    Chowdog, I want to vomit. So the only choice my family has is to go into a Walgreens (that doesn't have our records) and tell them we haven't been vaccinated and ask for our first dose? Making sure that we get the same vaccine as we had previously? Unethical, probably. But damn, we are all high risk for various reasons and I am terrified for our health and safety. My daughter is 17.

    What are you guys doing?

  • chowdog
    chowdog Member Posts: 190
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    cm2020, looks like they r discussing for another vote for those > 60. It sounded like they r more concerned about the risk of myocarditis for 16 to 18 year old. I would recommend discussing it with your doctor about risk and benefit of a booster.

    Edited to add: they continue the discussion. some members support > 50, some support healthcare workers, and those with other underlying conditions (not included as the 3rd dose for immunocompromised).

    this is the FDA vaccine advisory committee. they have input on FDA decision, but ultimately FDA will make a decision not the committee. CDC will have its meeting next week, then back to FDA for another meeting. So, it's not over yet.

  • cm2020
    cm2020 Member Posts: 530
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    Chowdog....Neither my husband nor I are 60. So even if they choose to approve it for that age group it won't help us. I haven't read anything yet, so thank you for telling me their concerns for the 16-18 year old group. I have a physical next week and will talk to my dr. Last week I asked my MO and I don't fall into the immunocompromised group (even with several auto-immune disorders). My daughter has a physical in 2 1/2 weeks and I will have her discuss it with her dr.

    I can't even think straight about this anymore. I am (like all of us) so tired of this and exhausted from constant worrying. Idaho rationing care (I am not in Idaho) and now this just feels like those of us that are truly trying are constantly getting smacked down. Right or wrong, it is how I feel. I am just sick at all of it.


  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    cm2020 - This was a vote on whether to give a booster to the general population 16+. If you're immunocompromised, then you should be able to get a booster. I'm not elderly or considered immunocompromised. I had Moderna with 15 weeks in between. I'm in no rush to get a booster and would prefer to wait until the half dose is available.


  • chowdog
    chowdog Member Posts: 190
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    cm2020, i edited the above reply to you with some additional color. the committee is also discussing people with underlying condition (those are not considered severe immunocompromised). and then CDC will meet next week to discuss, then back to FDA for more discussion. so it's not over yet.

  • cm2020
    cm2020 Member Posts: 530
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    SerenityStat.....I am not immunocompromised. I plan to talk to my immunologist to get her thoughts (don't see her till November) and am going to ask my primary about doing titers (they are able to do that, right?) to make sure my vaccines fully "took" (can't think of the correct term right now) because I was on prednisone...about 10mg at the time I got both vaccines. My Pfizer doses were at the recommended 3 weeks apart. Same with my daughter. We don't reach 8 months until early December.

  • cm2020
    cm2020 Member Posts: 530
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    Chowdog...Thank you for the update. I am glad it isn't over yet. I know I should probably go read it for myself but I started crying just seeing the headline and reading your first post about it so trying to read and process it isn't going to happen.

  • chowdog
    chowdog Member Posts: 190
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    Like I said earlier, the meeting was a $hitshow. the whole process is. how did they not to be prepared with more voting options, instead of just lumping everybody into 1 big group? Also, Niki Manaj's tweet made into public comments.