TRIPLE POSITIVE GROUP
Comments
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PBrain: I've had 5 MUGAs and don't remember a film coming down over my face. Curious what I'm missing! Mine were all a breeze except that I hated all the radiation going into my system.
Many a mention of Omaz lately and her radiation cures which many of us used and were successful. Where is Omaz? Has anyone heard from her lately?
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arlene - I was wondering that myself - where the heck is omaz? I am hoping she is just busy! She has posted in the last few days, so hope all is ok!
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I didn't have to hold my breath. My RO said since mine was on the right side, the heart was not an issue. I only had one arm over my head. They placed a gel pad over me each time called a bolus, and I was offered a warm blanket each time. I joked that it was the highlight of my day. I had three technicians each time. The tattoos actually do sting briefly. My RO didn't want me using creams or lotions until he told me to. I didn't need anything for the first couple of weeks and then I started using Aquaphor. My skin got really dark and now that I am 10 weeks PFR it is still somewhat dark but much less so. It was bar far the easiest part of this journey. I did not feel claustrophobic at all. Mine had music playing in the room and the people were super friendly. I met once a week with the RO and once a week with a nurse to check on my progress.
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PBrain - they asked me if I was claustrophobic just before they did the CT, you might want to consider the Xanax - it wasn't long but it was around my head/neck/chest region. I found the bone scan harder than CT or MUGA scans
My friend told me that the minute they tell you to breathe normally you won't be able to as you will be conscious of it, she suggested being prepared with a pleasant thought, memory or place to 'go to' to help get focus off the breathing
Hope all goes well tomorrow0 -
Pbrain,
Similar experiences as others with rads. I used an absolute ton of aloe and also aquaphor, and I didn't have too much skin damage. I had a freakish mood disorder that came over me the first day and ended when I was onto the boosts, but you probably won't have that. FYI, you should probably be ready to dispense with any remaining modesty you might have of having all kinds of people grope your breast, stare at it, draw on it, blah blah blah. It's awesome.
Was your tumor on the left or right side?
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Pbrain,
I'm only mildly claustrophic and had a terrible time with face down rads. It was by far the worst part of the year if my discontent probably made worse by the fact that everyone said it would be a breeze. I hated every friggin minute of it and finally asked for xanax.
However I am happy that I did have rads. Much research suggests a very significant benefit
for survival.
No skin problems whatsoever because i followed Omaz method. She suggested a soft cotton tank top be worn folded under the breasts under your sports type wireless cotton bra. This way your skin doesn't chafe. I used many tubes of Miaderm and baking soda as a talc during dry periods.0 -
Well it's been quite a week. 2 BS appts (Thurs and yesterday) and chemo today. It seems like at every Dr appt we go to we get another piece of the puzzle. Yesterday we found out the pathologist for BS#2 saw not only the 3+++ cancer in the lymph node that was taken out but also DCIS in the breast tissue that is remaining from the BMX in 2000. He feels very strongly that I need to have the ALND surgery to take care of both cancers. BS#1 also felt the surgery was my best option, but did not mention the DCIS issue. Both also feel I would benefit from rads, but I have not seen the RO yet. I have been praying that I would have a clear direction as what I should do, but I was really hoping that this was not going to be the answer I would get.
Both BS's are very experienced and are highly regarded. Now I just have to decide which one to go to. Although BS#1 has been doing surgery longer (he is in his 70's) I am leaning to BS#2 because he is also working on a vaccine for HER2 and says I would be a good candiate for it depending on the pathology of the surgery. It is in phase 2 (no placebos) and I would have to wait until herceptin is over in November, but they are having excellent results so far. My PS is also at the same hospital and they work closely together. Since I will probably also have to have rads, there is a high probabilty that I will have to have something done with the implant when all the treatments are over with. At least I have some time to think about this, because I still have another chemo in March and surgery will not take place until 4-6 weeks after that. All in all it looks like it is going to be a very long year!
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{{{Bren}}} Sounds like you have access to some really great doctors. Looks like you are stuck with us for a while. One of the biggest lessons I've learned is cancer treatment is not an exact science, and we have to make the best decisions we can along the way. The vaccine sounds so promising!
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Bren 58,
None of us is prepared to make most of these decisions we face during treatment. Unfortunately in many cases even our mds don't concur which makes it even more difficult. Seems yours mostly agree .
Good luck with your decisions.0 -
Bren58 sounds like you have good choices.
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bren - I did the Her2+ vaccine trial linked up in Washington, D.C., finished the the 6 month portion in December. Which trial is your doc involved in?
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Bren,
Once you meet with an RO you will truly have all the pieces to the puzzle they can give you.
Then the hard part.
Decision time.
I'm keeping you in my prayers
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Thanks everybody for the radiation info! It is very helpful. I went to my appointment today and they decided to reschedule me. Looks like they want me to have a 2-3 week break between chemo (the last one is this Friday) and radiation. Think that's because I'm so anemic? I was a little surprised.
Bren, you seem to have great options. Whatever way you go, you sound like you will be in good hands. :-)
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Hi Arlene and SpecialK - I'm good, I was just taking a little break, I check in but haven't been posting as much.
I am so happy that the rads suggestions are helpful - Thanks LeeA for summarizing them.
Hope you are all doing well!
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OMAZ! waves 2u
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Hey lago - Waves back to ya!
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SpecialK, I am not sure which trial it is. It is beeing done at University of Pennsylvania Hospital. He said it would not even be open until later this summer. I don't think he wanted to overwhelm me with information about it since he is not sure I would be eligable until after the surgery. He did say that it is made with your own cells that they extract, mix with the other componenents and inject back in. He also said it is 6 injections. Other than that, he did not give the trial name.
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PBrain - I think it is pretty typical for them to allow at least three weeks between last chemo and rads. Congratulations on your final chemo this week!
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Pbrain, there were a few weeks in between for me as well. And congratulations on finishing chemo!!! That's HUGE!
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Ditton on the congratulations, Pbrain!
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Hello ladies, I'm newbie to this thread.
I to am a triple +,initial dx @stage 4,7 x9cm tumor with lymph involvement and meta to sternum last June.
Began with four months of chemo with herceptin, followed with a partial mastectomy with auxiliary lymph removal of left breast. I begin rads the first of march m-f for six to eight weeks. I've been given 75% chance at completely ridding myself of these cancer cells, without recurrence.
Of course I need follow up scans and blood work every three and six months forever, and I know that they may be too optimistic but I'll take it and hope it to be so.0 -
Welcome, Krazywolf. There's lots of good information to be found on this thread.
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Hey, was noticing that nobody I've seen on this thread thusfar is a stage 4, except for me, does anyone know of anyone else with similar dx-tx as mine and how things went for them... Or am I a rarity ?
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Woohoo Pbrain! Finishing chemo must be an awesome feeling for you since you went through so much with it!
Welcome crazywolf! I am so sorry that you are joing us, there are some amazing women here that have a lot of encouragement and widsom. There are also boards just for stage III & IV bc sisters. You might want to check those out too.
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Shasha,
I have almost the same Dx, and now in the hospital to finish my 16th chemo treatment. Time is flying. Wishing you to pass all chemo with smile and positive attitude. If I may advise you the pre nausea drug I had used for my first 4 treatments: Emend ( there are 3 pills), its covered by some insurances,0 -
Yay Pbrain!
krayzwolf66 Actually we do have one stage IV on this thread. Isn't camillegal here? 75% chance sounds more like a stage III but I'm no doctor. That's an excellent prognosis. Typically stage IV means that the cancer has spread to distant body parts or nodes like the lungs, liver, bones, etc. and the doctors don't typically talk about complete remission but you might have a special case… and that's a good thing. I would ask your doctors to clarify.
Don't look online because the statistics include all people with breast cancer including those who don't do any treatment or those who just do some. In my specific case, my chances of being alive and cancer free 10 years post diagnosis is about 84%. Looks like both of us have good chances of beating this. This summer will be 3 years since diagnosis.
Don't feel you can't stay here because of your stage. This is not a thread based on stage. That's one of the things I like about it.
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Hi, sorry did not answer in time, today is my last chemo and I started to feel tingling in my fingers just 4 days ago, doctor said its ok. The worst for me - nose bleeding and toenails coming off. Do not know how to handle it.
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TonLee,
Thank you for the information, I love sugar, trying to cut it down, but unsuccessful:every time, I am getting a candy, saying that this is the last one...0
