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Anyone here who has used Sevabertnib for treatment?
It's been some time since I've posted here. After having a rt lower lobectomy in Feb of this year. I was cancer free! After having my first 3 mos scan (altho my first scan was actually 5 mos after my surgery), 4 pulmanary cancerous nodules, metastasis in both lungs and likely in my liver and spleen. Long story short, I wasn't happy about the treatment I was being offered. It was the standard treatment. I have a very rare and aggressive mutation called HER2, which more often shows up more often in breast cancer. The standard treatment in Canada is CRBPPEME +PEMB. It gives me 3-24 mos. My husband and son found a treatment called Sevabertinib that is not approved in Ontario. Eventually, we found a randomized trial at Princess Margaret and I have been accepted! That is the best news for me. It's a cross-over study, so I could be given the standard type or the Sevabertinib (Sevey). If the standard is not working, I automatically start with the Sevy. I can't start until early Sept due to the MANY tests required before the start. I have other things to be grateful for. After my lung surgery, it was discovered I have HoCM, but that is not an issue for the study. (whew!) The other great thing is that I now have an amazing support team working for me. Princess Margaret is one of best (if not the best) hospital for cancer, better than the one I previously had, Jurvinsky. I am devastated to hear of metastasis so quickly after my lobectomy. My Thoracic surgeon was also devastated to see those results. The biggest hill for me right now, is having a good result in my brain MRI. My cancer is known to spread to brains. If it has spread, I must have radiation first before entering the study. I have that test on the 23rd of this month. It's that hardest part of having cancer for me..(waiting and waiting).
It's been really hard for me to get these results. Shocking really. I do know I have the best possible team working for me and that brings some comfort. There will be lots of ups and downs coming up for me. I will keep you posted as I move forward.
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Hi @donnademps ,
I’m so very sorry for all you have been going through. I can only imagine how overwhelming you and your family must be feeling.
I’m as well glad you were accepted at Princess Margaret !
Having to have so many tests and doing the waiting game over and over is difficult to say the least, I pray it moves along quickly though for you.
Prayers offered up for a positive result of your Brain MRI on the 23rd.
Yes, please keep us posted.
Positive thoughts sent your way as you navigate through this.
🤗 Daisy
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2 Reactions@donnademps the emotional roller coaster we live with is one of the most challenging aspects of having cancer. I'm truly sorry to hear about your progression. Lots of prayers for a clear brain MRI. I'm thankful you have such a supportive family and that you have access to the clinical trial for sevabertinib.
there was a study about a year ago that found respiratory infections, including flu and COVID, can awaken dormant cancer cells and cause them to rapidly proliferate for about 2 weeks after the infection leading to metastases. that study used HER2 mutated breast cancer cells in mice, but it's thought that the findings can be extrapolated to most cancers. this is a helpful lay summary that also links to the academic paper.
https://buds.org.uk/covid-and-cancer/
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7 ReactionsDonna, @donnademps, You've had quite the year. It had to be difficult to hear about the advancement of the cancer. I'm sorry that you are facing this. Know that we are here for you, and some of us have faced this type of uncertainty in our futures too. The thoughts and questions that run through your mind are difficult to counteract. Your son and husband sound like saviors! They are wonderful to identify a trial and worked to get you accepted. Give them both a big hug! I'm not familiar with sevabertnib, but a quick search shows much success and an accelerated acceptance by the FDA in the US. That's a good sign. Take care of yourself over these next few weeks. Do you have a hobby or a friend that can help take your mind off things? Maybe try to go for a walk? Are you feeling ok, or are you starting to notice any symptoms?
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3 Reactions@mamajite
Thanks for sending me the link regarding Covid and metastasis. I read the article and found it kind of alarming that once again, I was not given any info regarding this type of info. I have had every Covid vaccine at this point...I'm to 10 at this point. I did send the link to my younger sister who has colon cancer and 3 yrs clear up to now. She's not someone who has rec'd the vaccine regularly. I hope the info I sent will give her something to think about.
Thus far, all of the testing thru Princess Margaret (and there has been a LOT) hasn't disqualified me for the trial. Just waiting the brain mri this Satuday. If it's clear, it's possble I could start my treatment earlier than Sept 4th. Thanks for you support, muchly appreciated.
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1 Reaction@donnademps you are most welcome. so far, none of the physicians I've discussed it with as a patient or friend/family member are aware of the study. 😬 I hope the info will also help your sister stay safe. 🙏🏻
There was another large study done in China that showed COVID impairs your immune system. Most "healthy" adults lose about 10% of their CD8 Tcells per infection and only gain back around 3% per year. In people with heart disease, the numbers were much worse. This also seems like important information for people with cancer, since we need our CD8 cells to fight cancer cells. 😔 😷
https://www.sciencedirect.com/science/article/pii/S1201971225005090
I'm so glad all of your prework for the study has gone well. Everything is crossed for your brain MRI, too. ❤️
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3 Reactions@mamajite
Just catching up after a fury of tests with many 3 hrs drives (one way) to Princess Margaret. Thanks for this link. I've read as much as I can understand, but reading the end results has very important information regarding Covid. Thankfully we do have every Covid vaccine that has been available, but did manage to get a mild infection anyway.
I have a friend with breast cancer who is very intersted in these types of studies. She appreciates me sending these links as well. Very helpful for both of us.
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