TRIPLE POSITIVE GROUP
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Hi All,
I meant to share this link yesterday...this is regarding the study about Paclitaxel:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4185415/#!po=59.7222
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Hi Shelabela,
Believe it or not, my mepitel was only changed once over the period of 30 visits. It held well...
I think the jury is out in terms of whether or not Mepitel really and truly helps. Some oncologists here don't even prescribe it. I used it and I had so little burn from radiation (surprising to me since my skin is so fair and sensitive). I am not sure that was because of the Mepitel or just how I am. I have zero remnants of rads on my skin. I had never heard of proton radiation before you mentioned it...I'll have to look that up,
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Hapb, Posey - And unfortunately that's not the only study that is reporting this:
2017: http://www.ajpb.com/news/paclitaxel-may-drive-breast-cancer-metastasis
and this, from 2016 http://onlinelibrary.wiley.com/doi/10.1111/febs.13767/full "the lowering of PTX dose with the aim of reducing toxic side-effects is adopted by most clinicians and believed to be beneficial for therapy optimization. In contrast with this belief, the results of our study alert us that such a strategy may have unexpected side-effects and should be carefully considered."
I know that the medical community doesn't jump on the results of every new study to approve new treatments but it hadn't occurred to me that this worked in reverse. Of course, the studies mentioned were done on mice and, in some cases, tissue from human breasts and the results might not be replicated in studies of human beings. And we don't have experts weighing in on the studies regarding their applicability to humans, either.
But I'm wondering how/why do they put the breaks on treatment of any kind once started and widely used? and I wonder how often this happens?
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I had no problem with radiation at all. My boob got a little tan😊It was a positive experience as my team was awesome and I met other patients and we socialized while waiting
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Hap - I'm not sure that the study is referring to starting/stopping chemo, although that might also play into it. I think - and I could be wrong - that it's referencing the level of the dose prescribed in treatment. It would be interesting to know how this plays out in weekly chemo vs longer intervals.
Also - the study looked at BC that was more advanced and not at early stage, which could alter it's meaningfulness overall
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Asking for help.
I was on the phone with my Case Manager from our insurance company.
She has recommended that I get a second opinion on my treatment at a center of excellence that deals with my cancer (triple positive). She suggested that I ask those of you in this forum where you went for a second opinion and if you would recommend a center of excellence.
I live in North Alabama just outside Huntsville.
Any recommendations?
Thanking all in advance.
Vicky
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Coach - You may already know this but I just discovered it - Dana Farber does an online 2nd opinion for treatment decisions. It's slightly pricey and not usually covered by insurance, but it might be worth a look. I'm seen at Johns Hopkins which is definitely a great place but I was looking into this because my treatment options are basically zilch because of pre-existingperipheral neuropathy. I think there are other centers that do this, too.
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shelabela- I didn't necessarily have a schedule to change it out, once it was peeling around the edges I would trim it, etc but then would change it when it didn't seem to adhere well. I think it ended up being a little more often than once a week for me. I also got rave response for nurses and dr on how well my skin held up, my skin us very sensitive and sunburns easily so was expecting the worst. Who knows if it was the Mepitel. but studies on it are very promosing!
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What exactly is Mepitel used for? Is it used to prevent radiation damage to the skin or to treat already damaged skin? Tomorrow's my last radiation treatment and my skin hasn't fared so well. I'm curious if I'm too late to ask about it.
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Soxfan,
I think it is too late, yes. It's to be used during treatment.
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Meowmmy- sorry you have to be here but this is a wonderful source of support and information. We're all in this fight together, let us know how we can help you. There are many success stories and words of encouragement that will get you through what's ahead. Best of luck with your surgery, take care. Hugs 😊0
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Coach Vicky, thanks for the information. It's great to know there are multiple options. My PS mentioned the nipple replacement but I opted out cuz I don't have much to work with. I have seen videos and photos of Vinnie's work and it's impressive- you'll be getting the best there is and you deserve it!0
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Shelabela- glad to hear your first proton rads went well. I wish you good results and no problems with the rest
Moodyblues- you have a great attitude looking at this break as time to get stronger, hang in there!
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Hapb, I've been following Chris Wark for awhile, his story is inspirational and the information he shares is always good. I haven't had time to watch his latest modules but I have saved all his emails with the links. I too believe spirituality is a helpful tool toward achieving balance, serenity and healing. I'm willing to try anything and everything to keep recurrence away. Thanks for always sharing helpful tips and great resources.0 -
Coach Vicky, I went to Cancer Treatment Centers of America in Zion, IL for my 2nd opinion. I knew this was the right place for me within minutes of meeting my MO. CTCA has a location in Atlanta which I think is close to you. CTCA is outside of my network but they adjust fees to in network. They pay for mileage and offer flights/hotels at discounted rates. More importantly the care far exceeds my expectations in every area. All of my doctors, nurses, technicians- everyone at CTCA provided the most wonderful care. They seem to offer more forward thinking treatment options than those in my hometown. Their philosophy is based on integrated care which I appreciate because it encourages wellness beyond just traditional cancer drugs.
I highly recommend CTCA. Best of luck with finding a good fit
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Thank you Deni, I feel pretty good right now.
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deny, posey, thank you for sharing the studies. I was trying to read and understand but it is too complicated for me but the conclusion itself is frightening. Here we arr those on weekly low doses of Taxol and what does it mean for us? I want to show it to my oncologist.
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A short update , I saw a team of two psychiatrists from the mobile unit yesterday and after a few hours an psychiatrist from the cancer rehab at my clinic. The mobile team, that is a more stand-by emergency unit, prescribed anxiety medication until there will be a diagnosis but the psychiatrist lady at the clinic talked to me together with my therapist and said: I see it all the day, you should try a mild ant-depressive, you will be feeling better in a few days, we have to put you back on your feet so you can relax and go on with your treatment. This medication will also be good for you when you later will start on Tamoxifen. The anxiety med the team prescribed you can take it so far but it is working through dopamin and is nothing but alcohol in the pill form, so I can eventually drop those. Here I am, day 1 after 1/2 pill yesterday, pretty tired and drowsy, slept a lot, but I guess it it too early to tell. It really helped that those of your guys who are on anti-depressives shared it with me. I do not feel like a failure now, I know it is hard on many people, not only on me. I know where are two possible ways to go when it comes to the mental condition: either I choose to believe that they get this bc out of me and subdued me to all the treatment that prevents it from coming back or if I sit and dread that nothing worked. The last option is not living everybody will agree with me. It is just I need to stick to the option one and do not let myself fall down the rabbit hole all over again, which is hard. Any suggestions? What do you tell yourself every day when any fear crosses your mind? Any strategies to share?
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Meg, that is why I wanted to use it. I burn easy and didn't want to get fried.
To all you other lovely ladies have a beautiful day! 🤗
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Another question: what about dates? Are they ok to eat? They contain a lot of sugar but other than that is there any contraindications?
Cherry
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Soxfan75 the original intent for Mepitel was for skin that had already been damaged- burns, etc and needed to heal. So I definitely think it could be used now. Its like a large, thin bandage with one side that is moist. My radiation onc said they prescribe it for people who are seeing lots of skin damage, they just don't use it as a preventative. Mostly because it is expensive and insurance won't (yet) cover it as a preventative. I saw studies from New Zealand on it being used as a preventative so I tried it. I bought it myself (its on Amazon and other places online, you can also ask your pharmacy- Mepitel 1 is what you want). Other than the cost there is no downside to trying it, its just an expensive bandage- you want to put it on and leave it on, change it infrequently. Cover all the areas that are damaged from radiation.
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Cherry - What works for me when that anxious feeling starts to overtake me is to do something that requires the use of my hands and my brain at the same time. For me, it's making dolls. Cooking and gardening work, too. I think it's because I'm using two parts of my brain at the same time which makes it harder for the anxiety to get in.
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Thank you Hap and Lita
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Thank you deni1661. Glad the Center worked for you.
Vicky
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soxfan,
we use mepitel in the hospital with cuts and superficial wound all the time. maybe its worth to give it a shot. its a premedicated film with holes in it so skin is able to breathe. per protocolin the hospital i work at, it can stay for 14 days
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Hi everyone. I am wondering if anyone has 1.) completed herceptin in the last two years and 2.) pursued the idea of continuing with nerlynx. I checked again and my MO said we will not rule it out and will decide when I am done Hercrptin. I was happy with that.
I did some more research on PCR and lymph node PCR and learned that a PCR after neoadjuvant chemo is not really a prognosticator of disease free survival or overall survival when one is triple positive.
My greatest fear is recurrence. I don't care about the nerlynx side effects because the Arimidex for 10 years is already going to make the next 10 years really fun. I just wondered if anyone pursued the topic since the last time we all discusse it here
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All the time Suburbs... I ponder what I should be doing now that Herceptin is over (14 August 2017). My current MO does not think the side effects are worth this drug, Nerlynx . He didn't have his boobs amputated and sat in a chemo chair for a year. I did. I wonder ...should I pursue this or not.
I finally got the brand name Arimidex and have hardly any side effects.
Vicky
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Suburbs, my oncologist said no, was not worth the side effects but I already said it before. What is about nerlynx that you want to try it? I admit I have to read on this subject.
Cherry
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