De Novo Stage IV
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@harrow I definitely relate to being concerned not having additional side effects. One thing that keeps me pretty hopeful is I’ve heard from quite a few women who say that Tucatinib didn’t give them any side effects. For others though it seemed hard to tell because they’re usually also taking it with Xeloda, and that chemo pill can cause additional side effects and they may not know which drug is making them have the side effects. I talked with one woman who dropped the Xeloda and was only doing Herceptin and Tucatinib and they said they barely had any side effects at all. All that to say, it could still be the drug and we’re just reacting really well to it. Fingers crossed there! Also yes I have to keep mine refrigerated as well. The woman who leads the trial at my cancer center told me they have a shelf life of ~400-600 hours or something crazy high like that so there’s been a couple times where I’ll take them with me if I’ll be out at night. I haven’t left them out of the fridge for more than 5 hours though. I’ve wondered how to manage that if I travel.
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Harrow - That surgeon was in his early 60's ( since retired) and that was in 2019. He said that early in his career dr's would take as many as 50 nodes in an ALND and that some really high number of patients (at least 50%?) would get bad lymphedema. He said mid career they developed a new method where they didn't have to take nearly as many nodes and that they got the lymphedema rate down to about 20% or under. He told me at the time of my surgery that the recent stuff he was reading indicated that younger doctors were back to taking 35 nodes and more now as standard procedure and that he just couldn't understand it. All the doctors who didn't like how he handled my situation were much younger and data focused. They seemed to think that they have to examine each and every node for verifiable cancer or the job is a shoddy one. They don't rely on broader statistics and info that says you don't necessarily need to examine them all, and that in many cases, it doesn't matter regardless. He also told me that there is something called a "reverse sentinel node" procedure that starts down at your forearm and works back up to the axillary area and allows for another check without having to take a whole bunch of nodes. This surgeon was on my large well known city's " best surgeons" list for well over a decade, and staff at the hospital loved him and went to him for their own procedures, so I had full confidence in his decisions.
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@jobbibo oh, that gives me hope hearing you say that others really don’t have side effects as well. I’ve tried searching for a thread on here about Tucatinib, but there doesn’t seem to be too many of us taking the drug. I think for traveling, I would just use the small soft cooler and ice pack they gave me to transport the meds in. The pharmacist told me the ice pack lasts ~12 hours and would be ok to take on a plane.
@threetree omg! I had no idea that there were standards like that. I don’t know what I thought they based it on, but not that many LNs removed. That seems a bit extreme. With a reputation like you’ve described, I can understand how you had full confidence in him. Thank you for sharing!
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@harrow Agree there isn’t a lot about Tucatinib here. I’ve joined a few Facebook groups, specifically a HER2+ group where I had some better luck at finding others with experience on Tucatinib.
Pretty good news with my ultrasound, however it leaves my pain / numb arm issue unanswered. They said my lymph node is completely normal and they don’t think it’s that causing any pain, they agreed with my oncologist that it could be nerve related. They even looked at my breast (I’ve only had CT scans since starting treatment) and said they don’t really see a mass anymore. I said that’s shocking because I still feel my lump and she said it just looks like calcification, and even said with a response this good that should be more motivation to have surgery. So I’ll be bringing that up again to my oncologist. Not sure what to really do about the pain but knowing it’s not my cancer directly causing the pain gives me some peace of mind.
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@jobbibo that’s great news! Although, like you said, it doesn’t help solve the numbness issue. But excellent to hear the LN is ok and that they don’t think there is a mass left! I wonder if seeing a physical therapist might help? I’m sure they see pinched nerves all the time. Keep us posted on what your MO says and how you’re doing with the numbness.
I hope everyone is having a good week so far.
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Dear denny123, you said you went for "PT" after noticing lymphedema. What kind of PT it was and for how long did it last? My wife's lymphedema is hardly noticeable and doctors are not very eager to prescribe PT, so I thought maybe some exercises could be found on the net? Saulius
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@bsabdra My left arm was noticeably puffy, including my hand. I went to a PT place and had a wrap-around thing on my arm that would get a bit snug, then loose. That was for about an hour.
The same thing happened with my right arm.
And I was shown how to do self-massage, starting from my hand and up. I just checked and there are instructions on the net. I did the exercises for several years.
Tell her to be very careful with scratches or cuts, and treat them with Bacitracin and a bandaid. She shouldn't lift anything heavier than 15 pounds. Also, hot tubs are not recommended.
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Dear denny123, thanks a lot for the info. I'll go looking for self massage thing. You are right about the scratches - she already had erysipelas a few times that had to be killed with antibiotics. We are handling all scratches with attention but some things are not to avoid. Yes, no hot tubs, and if I remember well, doctor also said nothing too cold too. Our lakes and sea are usually pretty cold, so she swims now only when they get warmer. Thanks again, Saulius
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Hope everyone is doing well! A little update on my end. I had a CT scan yesterday, first one since starting the trial. Liver lesions are still shrinking, the smallest ones have stayed the same. My biggest one went from 4.9cm x 2.2cm to 4.2cm x 1.7cm. Bone spots have stayed the same, nothing new or growing. Definitely happy to hear this!! Just wish those liver spots were shrinking faster, but so grateful for any shrinkage at all.
harrow, I hope all is going well with the trial on your end!
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jobbibo, nice to hear of your good scan results!
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What great news, @jobbibo!! Thanks so much for sharing this with us. 🎉
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Yay Bobbi Jo 🎉
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@jobbibo such great news that you’re continuing to see shrinkage! I hope things keep getting smaller and smaller until they disappear completely.
I’m doing well, thanks for thinking of me. Still no real side effects from Phesgo or the trial pill. Hard to believe that something can kill my HER2+ cancer but not cause the rest of me any issues. I know this is not the same experience for others and I feel very fortunate that the side effects have been very minimal for me.
I hope everyone else is doing ok! Thinking of you all.
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Thank you so much everyone!
@harrow I’m so glad to hear you’re having very minimal side effects! It’s amazing to think there’s treatment out there that doesn’t interfere with quality of life. I experience some nausea and stomach issues but as long as I’m keeping up with the right meds I’m surprised how well my quality of life has been since stopping Taxol. I hope things continue to go well for you for a long long long time!
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That is great news, jobibo! Wish you continued good results with your treatment regimen. Harrow great to hear you’re having no SE’s with your drug combo and as a fellow HER2+ it’s good to know Tucatinib can be gentle on us.
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Just wanted to share the good news that I'm 16 years NED this month after a de novo diagnosis in 2007. At least based on CT scans and markers done in August last year.
Olma, I'd change Kierkegaard's quip to "dancing". I think that's my secret. With Zumba everything is all right.
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@heidihill Wow, that’s amazing! Congratulations! Thank you for sharing. Stories like yours provide me with hope that it is possible! I wish you continued NED for many more years.
@olma61 I don’t know if I’m on Tucatinib or the placebo, so I can’t say for certain that it is gentle on me, but here’s hoping! 🤞🏻
I hope everyone is doing ok! Thinking of you all.
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@heidihill That’s so great. It gives others hope and inspiration to hear these stories.
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@heidihill Congratulations!!!!
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@heidihill That’s so amazing to hear, congratulations!!
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Dear heidihill, you and your story was a huge inspiration for me and my wife in 2017 when she started her journey and fight. Yes, Zumba really seems to be a great medicine!:)> Good luck and enjoy every minute of your life - you really deserve it! Saulius
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Hi Chicagoan! Good to see you doing well too. I’m glad to see many friends on the boards and very sad to read of a few who’ve passed on, especially Lynne who was so incredibly kind and comforting to me and many,
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I can’t find the post from someone asking if I’m only on Ibrance. I’m on Letrozole and also get a Lupron shot every three months. I’ve had my lifetime dose of Xgeva so that’s done too.
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I had my annual MO visit and we agreed that I’d go to a 2 week on, 2 week off schedule. While I’m worried to mess with something that is keeping me stable, I’m so very hopeful this will help with the fatigue, if it doesn’t, I’ll have to consider retirement.
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A pretty quiet thread lately. I hope everyone is doing ok. Not so great news on my end. I had a brain MRI as part of the HER2 trial I am on and it seems as though I have two brain mets. One is 10mm x 8mm (was 2mm at the end of December but they weren’t sure if it was a met or not) and the newest one is 5mm. I guess this means I am on the placebo and not Tucatinib. I am just waiting for the call for gamma knife.
Going forward, I can either stay on the trial since we don’t know I have the placebo for sure and continue to treat any new mets with gamma knife (which my MO says can be treated well for a long time - months or years), or I can be more aggressive and switch to Herceptin, Xeloda and Tucatinib. My MO says I can’t just be given Tucatinib by itself, which is unfortunate. I can expect a brain MRI every 3 months or so.
I asked my MO if she thinks there are more cancer cells circulating around up there just waiting to latch onto my brain and she feels that is unlikely as these are so small. I don’t know if that’s true or if I can expect more mets to show up down the road. My latest PET scan from February shows no evidence of disease in the rest of my body.
I will go through and post on the Brain Mets Sisters thread, but if anyone here has any experiences or thoughts they would like to share, I would appreciate it.
I also did go ahead with the mastectomy. The pathology report was good - no residual IDC, only two small high grade DCIS (10mm and 11mm) that were removed with clear margins. I was confident in my decision and the results confirmed it was the right call for me
Thinking of you all.
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@harrow I’m so sorry to hear this news. It has to be so frustrating to be doing so well everywhere else but having spots pop up in the brain. I’ve heard some great success stories with gamma knife and I hope the same for you! I’ve thought about what I’d want to do in this situation where it’s working everywhere else. My second opinion oncologist told me if that were to happen they typically prefer to do gamma knife and stay on the same treatment if it’s still working everywhere else. I think I’d prefer that route to give me as long as possible on one line before moving to the next, but I’m sure it’s a hard choice. I’m sending all the positive vibes your way that whatever choice you make will work great for you. ♥️
I’m curious why they would suggest Xeloda, Tucatinib and Herceptin before Enhertu. Here in the states Enhertu has moved up to the second line for HER2+ and crosses the blood brain barrier. I’ve seen people talk about good success with brain Mets on both of these lines though! I hope there’s some people who have been through this that can chime in with their experiences.
I’m so glad your mastectomy went well. I can imagine that brings some relief! My oncologist faxed a letter to my surgeon saying that I’ve been having a good response and once I have a mammogram in May would likely recommend me for surgery. She’s recommending a lumpectomy but I would like to discuss both options with my surgeon.
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@harrow I’m also very sorry they’ve found brain mets. I’m wondering why not Enhurtu next as well. I know illimae has done very well on Enhurtu for a very long time. I know you have tough decisions ahead. I’ll be thinking of you. Thank you for posting and letting us know how you’re doing.
I’ve been in Orserdu five full months and a few days, and I’m doing well. The only thing we go by are my tumor markers and symptoms, and my tumor markers have consistently come down since October. I’m also able to eat and not feel full until normal, which hadn’t happened in a very long time.
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