Torn …. Scared to have vaccine scared not to

Sam09

Hi Guyz…. Wondering if any others with her2 positive currently on herceptin and perjeta have had either Moderna or Pfizer ?
really scared to have it as I’ve had such problems with skin reactions from my drugs over my course of treatment. The fact no one can reassure me what could happen is scaring me big time. So far I’m not risking it but hope someone can let me know how they went if on my treatment with same cancer as me I would be really grateful x

arpie

HI @Sam09

I'm not on those drugs but can understand your concern.  Have you spoken to your Onc about getting the jab? That should be your first call .....

I was sitting on the fence in the early days, as my husband is on permanent chemo & I was concerned about it making ME ill (as in the early days, all the press seemed to be about people getting ill with blood clots etc.)   And Hubby's immunity was compromised anyway, so he definitely wasn't going to have it intitially!!

But then I had my first shot with no real side effects & our Onc then told us to definitely get Hubby injected too, as with him getting the Covid - it would be FAR WORSE than getting the shot and possible side effects! He had less side effects than me!  So I am now double vac'd and hubby has his 2nd one in a couple of weeks.

take care xx

Cath62

Hi @Sam09,    Have a chat to your dr. There seems still so much fear about the jab. I have had my double dose of AZ. Yes a slightly sore arm at injection site on first jab and a bit tired too. Nothing on second shot. I suffer lots skin issues from treatment and other health issues but had no skin issues from the vaccination at all. I would much prefer to have a skin issue than covid. It's a horrible disease. It certainly isn't like flu and you would never want to get it. Please consider talking to your dr and following your dr advice.

Sam09

Thank you for your replies my doctors do not advise nor not advise this is a personal decision. One that is making me lose sleep over. I certainly don’t want something put in my body I have to be made to sign a form I may die doing so. I’ve come so far stage four cancer I’m going on six years. I feel forced railroaded and threatened and bullied. The media are mass scaring everyone. I’m 90% not getting it I’ve never been an anti Vaxxer but they were throughly tested. I put the post on to see only if I could get some experiences of those on my drugs  with  my cancer that have had it as I see with the dictation going on we may be forced to be vaccinated to enter a hospital and then I’m stuffed I’ll be forced to have it. I believe then I’ve come this far maybe for nothing as my immune system is strong that’s how I’ve lived this far with a healthy persons blood test always. I’m very fit and only eat food that helps me benefits my body I don’t want to have it but feel forced. 😔 to me it should be a freedom of choice. 

Cath62

Hi again @Sam09, sounds like you have made your decision and that's yours to make. 

I think we all have choice and so do business and hospitals etcetera. I guess some will choose who enters their business or hospital. I think they may do something like only vaccinated or those that have a negative test within a certain time frame. I think in Australia we would need to offer something like that for those that choose not to vaccinate. We have more time to see what will be put in place when we reach the 80% vaccinated. 

Ausmum2

Hi @Sam09  

i chatted with my GP and he chatted with my Oncologist and treating team and together we made an informed decision and organised for me to have Pfizer whilst on chemo. It was timed to fit in between chemo cycles (and I needed some additional surgery to deal with a seroma) and fitted in there too. 

I had the “usual not feel amazing” after Pfizer second shot but nothing out of the ordinary- amazing really when you consider what my body has carried me through for me in the last less than 5 months. 

Overall, the conversation had with my medical team was a combination of “risks of having the immunisation” vs “risks of what I would be treated with/could be treated with if I got COVID-19” and this helped me to understand it was a balanced risk of “an immunisation which has been given to billions across the world for more than 12 months now, which was already in train due to SARS and the result of years of world-wide medical co-operation” vs  “medical treatment which is far more experimental, much less tested on less than a million in the last 18 months and has a very low success rate and is almost untested on those receiving cancer treatment at the time of needing intervention”. 

I also got asked “would you engage in a medical trial for cancer treatment if you needed to” - and when I answered “yes” that gave me a pause to consider too. 

It is very much an individual decision but I did find that when the team put the evidence in that sort of perspective it was “hmmm yes I get what you are saying to me”. 

Good luck with your decision. 

Afraser

@Sam09
You have a freedom of choice but that choice should be based on fact. All vaccines used in Australia have met Australia’s high standard testing. AstraZeneca has a very, very small incidence of a particular kind of blood clot - you will be able to have Moderna or Pfizer. They are new vaccines but not experimental. As @Ausmum2 notes, they have been tested and used in many countries around the world. Unfortunately there is no proof that eating well, exercising etc protects from COVID-19. Medical interventions have been critical in your treatment to date, this is another one. As for hospitals, many unvaccinated people who already have the virus are being treated every day - vaccination, for them, is a long way off, after they have recovered. Some unfortunately won’t have that opportunity. 

Julez1958

Hi I am not on herceptin so can’t help you there but got the astra zenaka shot as soon as I could after discussing with my GP and oncologist.
I am 63.
It seems very unusual that your medical team are not advising you one way or the other whether yo have the shot or not.
I understand that you can get a medical exemption to vaccination from your Doctor and that will mean you can still go to hospital etc even though unvaccinated.
But sounds like they are not prepared to give you that so you are indeed in a tricky situation.
I can only give general advice which is that Covid 19 is not going away any time soon, it is an extremely nasty disease and the risk of serious illness or death is much higher if you are not vaccinated.

Sam09

Cath 62 thank you yes we have plenty of time ans I appreciate your comments I must be meeting health professionals that also believe in freedom of choice I will sit back and make the decision that’s right for me I won’t let other people push me into anything I don’t want and never had throughout my treatment. I have and always will call my own shots and believe me I’ve had many doctors advise against my treatment choices and each time I’ve been right with the decision I’ve made and known was best for me. My husband had the shots basically because he was forced to for his profession he wasn’t happy and supports me to make my own choice and I will 

my onc tells me I’m the healthiest person she knows with or without cancer and I do not agree that being super healthy won’t help co vid it has a 98% survival rate millions have survived it’s the unhealthy or old that don’t. I’m leaving this forum at this now for I see just as many railroaded media scared people here that feel it’s fine to give their opinion but don’t like it if someone else’s differs but thank you your right we have lots of time I know many many many people exactly feel like me and bravo to them for not being followers 

Zoffiel

@sam09 I'm one of the 'ancients' here and have seen many people struggle with the medical advice they have been given. 

My mother, who nursed for over 50 years told, me when I first joined that profession, that the noisy people tended to live longer. Questions and enquiries can save your life in a system that is overloaded and tends towards the most convenient option. 

There are some great enquiring minds here, I think @Ausmum2 has given a solid response.

None of us like being told what to do. There is still an element  of choice, Your choice may limit some of your options in the next few months. It's possible that you may find that being non vaccinated in the future  may not be so restrictive.  I think it is likely that things will ease once those who choose vaccination have had access. 

I've had so many drugs pumped into my system over the last 16 years. I just see this as another way to extend  my existence. The science behind those vaccines is not new, though I admit that the acceleration to our current situation is unusual.

I don't think anyone here will judge you because you don't want to be vaccinated. Just as we don't judge those who choose to take alternative courses with their treatment.

There is a huge degree of luck involved. I wish you luck. Mxx

BlackWidow

I know 2 people who have been in hospital on ventilators for some months.  Unfortunately the brother and mother of the lady have now passed away.  She was having chemo and although the specialist said it was a good idea she refused to be vaccinated. To have come almost to the end of BC treatment then to die like that is enough to make the decision.  It is a risk to have the vaccination and a risk not to, we never know who we will come across and who will pass it on to us.  The lady passed it onto the mother before she went into hospital.  Very sad for the hole family.  Good luck with your decision.

kezmusc

Just another in the long line of "risk vs benefits"  that we've all had to make along the way.  The fear mongering is exponential and generally spread by those that have absolutely not much of a clue. Sure it was pushed through quick but not from unknown sources and it truly is so sad for the people that have passed due to it. 

  Compare the list of "possible" chemo effects to the list of possible vaccine effects.  Fairly certain I know which one will win.  
"Pfizer side effects including the less common ones 14
Paclitaxel  30 not counting the severe anaphylactic reaction that some people have which is why the nurses sit there with you for the first 10 mins,
We've all had to take responsibility for our health along this little trip.
Do we have chemo, do we not? Are we ok with what "could"  happen either way. Same thing I guess

 I'm with @Zoffiel and have had that much toxicity put through my body that I just figured I made it through that so it should be fine.  Plus I work for Qhealth and all the nurses there had had theirs with only a few with any kind if reaction to it and now it has become mandatory.

 I think everyone should have a choice and some of what is happening is akin to coercion (read that as if you want your job or to go to a concert soon you will have to) they say they won't but it's already happening,

 So double Pfizered over here with no effects but a dead arm both times

All the best with your choice luvvie

FLClover

Hello @Sam09 🙂. 

One of the reasons we all like this forum is because we know we can’t always trust our doctors. The ladies here have made their own list of side effects associated with hormone blockers because the specialists haven’t included them in their lists, and most of them flat out deny that they are due to the meds. However we, the women who actually take these meds for years, know differently. So that’s why that list exists. We also ask each other for advice because once again, not all specialists give the same advice, and some are very cold and do more harm than good. I myself have read many such cases on here and on other platforms. That’s why when doctors start telling us all to take a vaccine with zero long term data on humans, even though it might have been around for a few years, I like to sit back and really think about this. Why they’re telling us to take it, especially when they are not specialists in that field. GPs, oncologists, breast surgeons etc are not trained in that field. Every time I ask a question about something else I’m worried about, the answer is ‘I don’t know, you’ll have to see another specialist.’ Oh, but you do know the long term effects of these vaccines in relation to my bca meds, do you??? Where’s the data?? That’s right, I didn’t think so. 

My own GP confirmed to me that if she gave me an exemption for the vax that didn’t fit in the exemption list provided by AHPRA, that she’d go to jail. And have her license removed. She also said I’m sorry, you’re not the only one who feels like this, heaps of ppl have asked for one but I honestly can’t give it to you. This literally came out of her mouth. She’s also the one who denied me an ultrasound for my breasts 3 years ago, which could have detected my ca earlier. Another GP told me last year that I had nothing to worry about, I def didn’t have ca. I was diagnosed a month later. So I say forgive me for trusting myself more than the ‘specialists’. I found my lump myself, and also discovered on my own that my first surgeon was in fact sloppy in his work, arrogant, and was forcing me to have an unnecessarily invasive procedure. If I didn’t dump him and find my new surgeon, I also wouldn’t have known that he left suspicious tissue behind. When I confronted him, he flat out denied it. But why would he admit that he made a mistake? He knows I don’t have the power to prove it, and he would most likely have been ordered to pay me back and have a tarnished reputation, which basically would’ve led to the demise of his career. I don’t think he cared enough about little ol’ me to risk that. I think that’s evident enough. So that little incident last year has led me to not trust anyone but myself, and other helpless people speaking out in groups like these. One such group is the one where numerous ppl have written seeking help after having severe adverse vax reactions, some even sudden death of family or friends. They didn’t even make it to the ventilator. Perfectly healthy and fit ppl with no underlying conditions. And fact is that most ppl can survive this virus. The data is out there. Whoever wants to find it can very freely. Ppl mostly affected by the virus are as you said, elderly and ones with comorbidities. Now I’m not saying it’s ok to let them just die, but the truth is that ppl do, especially under those conditions. It’s the cycle of life. And we can’t exactly ask young, healthy, fit and even elderly who are in great condition to take smth not natural and definitely not sufficiently tested for the minority who are unwell. When I was post op and feeling weak, I stayed home and kept away from ppl. I didn’t ask everyone else to stay home so I could go out safely. Also, my mother and father, who is 72 got really unwell for a couple weeks. My brother got unwell just before them. They had covid like symptoms. They all recovered with rest, fluids, vitamins and tea with honey etc. Natural remedies. They are all unvaxxed and refuse to get it. But those stories don’t make it to mainstream media. And a lot of nurses are also speaking out and angry that they survived without a vax all of last year, while working with covid affected ppl and never getting sick. Now they will be fired for not getting the vax, even though it’s clear they are perfectly healthy. There’s a whole other science on asymptomatic ppl. To say anyone could be carrying it is...well you know what I want to say. 

Things are complicated, to say benefits are greater than risks may be true, but for me that only applies when we know the full risks. And we don’t, not now. And also, only when it’s smth necessary, which this isn’t because I feel a healthy immune system is much better at combatting a virus. So frankly I don’t see any benefits of an untested shot. 

Good luck with your decision 🍀. Sorry the comment is so long, but it’s a touchy and complex subject, and I needed to explain well how I feel. I also don’t intend to offend anyone, and am not against anyone taking it. I’m just pro choice and pro freedom for everyone. 

FLClover

Tbh I almost didn’t comment. I wrote a comment on another thread about this a while ago and got attacked and bullied by a number of women. My comment, which took ages to write, also got deleted because apparently it was misinformation. To this day I stand by that comment and it wasn’t misinformation, but I don’t have the time and energy to sit here and be bullied. I will go where I am appreciated. The comments you got are much nicer, believe me. And I’m actually glad they are 👌🏻. 

M 💕

Sam09

Thank you for your comment I appreciate the responses. We have always lived in a country free to make our own choices. This now appears to be more about opening borders for the government than any safety or health issue just opening the borders this vaccine won’t stop this virus spreading or certain people dying no one knows for sure anything. I will sit back we have the luxury too here and yes FL Clover you are right this virus millions are surviving it has a 98 % survival rate. I see people that get the vaccine that want a medal well bravo but not everyone wants a vaccine you cannnot be guaranteed one it works two it’s safe for YOU to have not me. Well atm anyway 

I appreciate all the comments for and against however all I asked was if someone on my drugs with my cancer had the pfizer and how it went. The non reply leads me to believe like me more people want to sit back and see not everyone believes everything our crazy trouble making media scare mongers into us suckers 

I believe many more people have died from the vaccine just like they are stating more people have died from co vid when the truth is they’ve died with co vid but OF something else anything to get people to the hubs so the world economy opens up 
what a world how sad this all is and how nasty and gullible people have become 😔

Mez_BCNA

Hi @Sam09

I can see you
have had supportive feedback from members on the forum already, however I also
wanted to share the website link to BCNA’s COVID-19
Vaccine: information for people affected by breast cancer  This includes resources based on the latest
and most trusted public health advice regarding the vaccine. You are welcome to
choose to read the information if you feel it is relevant to your needs.

Also feel free to reach out to our Member Support Team helpline 1800 500 258 Mon-Fri 9am-5pm AEST