TRIPLE POSITIVE GROUP
Comments
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Nancedawg - I like what lago said in response to your question. The elderly you are talking to that had mastectomy or mastectomy/radiation are the survivors, the other ones who may have done similar but did not get the same results are not here to tell their stories.
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Thanks speacialK-I am her2 x 3 so I would not be eligible even without the herceptin:(
Wish I did not have to travel so far for a trial. But, I am hoping my dr will approve one for the group I go to in the near future. They keep voting them down.0 -
jennifer - I am also Her2+++, but doing the trial (same as fluff) for those who have completed their Herceptin. I would imagine it would be tougher for you to travel - you have young ones, correct? I fly up on Sun, return on Wed, every three weeks until December, but I have the advantage of friends/family for places to stay while in D.C., and can take transit to the hospital where the trial is.
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Jenn and Tonlee....thanks for the exercises. Jenn, that one feels really good!
Tonlee, I do work out all parts, but that area between the shoulder blades just feels like it needs a massage all the time. I hadn't found the right kind of exercise that felt like it was helping in that area. I'm going to check out the rocker.tv0 -
Hi everyone,
I was wondering if anyone has used myfitnesspal as an app on their phone? I used to use it to count calories...but just realized I could use it to track my fat intake percentage on a day basis to try to get it down to around 20-30%. It is not perfect...it can't determine between good and bad carbs...it just tracks carbs...but, i already know what types of carbs i should be eating...and i can't lower the goal of the fat % than that of 30%...which is what they recommend...but, all in all I love the app. So easy to use!0 -
Fluff, I forgot the easiest one! lol
Put some weight in your hands, arms straight down at your sides....stand straight, breast out, butt out, SHRUG.
Remember not to draw your shoulders forward and toward your ears....draw your shoulder blades up and together.
Do three sets of 10-12.
This really targets the area between the shoulder blades....
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Jennifer, i have used myfitnesspal before bc. At first i didnt believe it could, but i really lost weight using it.
Tonlee, and others, is there benefit in doing weights even on days/weeks when i couldnt put enough protein in? Im just bouncing back from taxotere/herceptin combo last week and today im feeling better so did some walking on the treadmill. I was wondering if i had anything to gain by lifting some even though im just beginning being able to eat fairly well in a week. Just some light weights to tickle my sleeping muscles. I was an avid exerciser before this.0 -
Soltantio-I think you are directing the question about the lump to me (got confused because I don't think that I have posted anything about rads). My tumor is in my right breast (around 11 o'clock) and apparently it is very close to my muscle (due to my implants) which is why my BS said we needed to proceed with chemo before surgery. I suppose that means that radiation would not be an issue. Thanks for the info on the aphinity trial...I am going to research things a bit more and then try to find out what trials are offered at the center that I go to. Now that I know that they have the option to participate.
I meet with the PS tomorrow morning and then the BS tomorrow afternoon and they have asked for a final decision so that they can arrange everything with their schedules. Once again, I appreciate everything that these wonderful women have shared with me on this particular thread. I have considered it all carefully...researching everything about each option carefully and I think that I will be going with a mastectomy. I know the statistics are the same, but, my breasts will never be the same. I will never trust them. I will always freak out every time I feel a fibroid. It does make me a bit sad, but, I am not that attached to them. I also think that if I have a lumpectomy and rads there will be some issues with having my implants (that I already have) changed out when the time comes. In general I just think for myself a BMX is the right thing to do.
Oh and the Myfitnesspal app...glad I started doing that again. I know friends MO keeps telling her to loose weight and watch her fat intake in order to reduce the risk of recurrence. So I started trying to track my fat intake and it was so hard. So I started up the app again and WOW!!!! I eat tons of veggies and fruits and yet still my fat intake is off the chart. It really made me realize what poor dietary choices I was making. I had myself fooled! No wonder my weight is going down, but, my waist is the same size! Yikes!
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Soltanio I was in a grey areas for rads. There are so many things to consider that even my PS said he doesn't keep up with it anymore. I thought for sure, as did my BS that I would be getting it based on the size of my tumor.
Typically with tumors larger than 5cm (mine was) they do rads regardless of node invasion. My tumor was in the upper left posterior region. My rad onc felt with all the aggressive treatment I was getting she would give me a pass. My gut feeling was that she was worried about hitting my lung and heart. The risk outweighed the benefit in my case I think.
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Barbie,
Yes. Do weights during chemo. I did, and frankly it made my "bounce back" time at the end (getting back to "normal") much easier. Also, since chemo throws you into menopause, getting the muscle back once it is gone is much more difficult to do. The body just wants to store fat! lol
You'll be lifting to maintain muscle not build. I don't thnk it would be safe or healthy to try to compensate with enough protein to correct chemo damage AND build muscle. So don't worry about the protein intake (meaning choke down as much as your able, but don't freak if for 3-4 days it isn't a lot)....and of course listen to your body, talk to your Onc...yadda yadda.
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Jennifer,
Sounds like you made your decision. Congrats! lol Seriously, for me the angst of DECIDING was one of the hardest parts. A plan is always a good thing.
Good luck with the surgeons tomorrow
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I agree with ton lee, the decision is the hardest. Once that's done, it goes smoother.
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I've an embarrassing question for y'all, but I'm hoping you can help me. Like many, during chemo my GI tract went haywire; it's been 8 months and it still has not returned 100%! And the gas... my poor husband...
Anyone have any helpful hints for dealing with the gas? And is this going to clear up or am I going to have to spend the rest of my life like this?
Thanks!
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Nwartlady, you are sooooo funny!!!! But i hear ya. Even... my poor children... I leave the scent behind me. I dont know the answer really. But you/we might try something with simethicone?
Thanks, Tonlee. I asked my onc and my SO, they're both good with it. So, today, i will. And will do so whenever i can esp bec of that menopause thing you mentioned about. 😱0 -
soltantio - I changed course for rads. I am another Jennifer but prefer Jenn...
There were 2 main reasons I stopped rads after 12 sessions of the planned 28...
1. I got pneumonitis from Taxol which is really unusual. It cleared with steroid treatment (which gave me bilateral cataracts) with no apparent long term lung damage. Pneumonitis is a known side effect of breast rads and my RO advised me I was at higher risk of getting pneumonitis from the rads because I had only just had it. Because of this she scheduled me for weekly lung function tests that were to take place every week while I was on rads.
Sure enough the pneumonitis cough and breathlessness starting creeping back on about the 7th day of rads and was getting worse. I had a lung function test in the morning of day 12 and by then I was feeling quite affected by the returning breathlessness and racing heart. I got to rads that afternoon and the RO advised me the pneumonitis wasn't showing on the lft "yet" and she wanted to forge ahead. I did that treatment and while on the table reached the conclusion that for ME the risks were now outweighing the benefits.
My rads plan had 16% of my right lung being hit hard enough to leave that 16% permanently damaged and fibrotic. I was now facing the potential for more of my lungs to be left permanently damaged by pneumonitis. There were also all the other long term potential side effects of rads including some very serious secondary cancers to consider.
2. At the end of chemo and before I started rads I started researching the risks of rads (I'm a researcher...). During my research I found a couple of papers outlining radiation induced malignancies. I had a high number of chest x-rays over a 2 year period in my adolescence and I was shocked to find women in my exact position specifically referenced in the research papers.
I had accidentally discovered that my adolescent history had actually put me at high risk of getting breast cancer. I discovered I should have been monitored for BC from about the age of 30 - I was 46 when diagnosed last year and I found my own lump since they don't recommend mammograms here in Australia until you are 50!
I had also discovered that the chemo and rads, while reducing my risk of recurrance would likely not reduce it as much as for other women, and that I would still be at high risk of NEW cancer in either breast since I only had a lumpectomy.
Both my MO and RO admitted that with that information my risks were now raised outside of the regular stats and they couldn't tell me by how much... RO still "felt" that rads benefits would outweigh the risks but she couldn't gaurantee it. I went into rads despite a huge feeling that it might not be the right thing. And, by doing rads I was facing not being able to have a BMX and recon for at least 6mths or a year.
So, after 12 days of rads, with the pneumonitis returning and the knowledge about my heightened risk of recurrance and new cancers, I quit rads. Made an appt with my BS the next week. Got the referral for the PS and am now scheduled for a BMX with immediate bilateral free TRAM reconstruction.
Hope that helps, but I'm pretty sure there will be very few women in the same position as me where the risks of rads were likely to outweigh the benefits. There are probably women though who are not prepared to accept the risks of rads to keep a breast with lumpectomy deformity on their chest.
I have told my lovely RO that if I ever get mets and radiotherapy will help I will be more than happy to revisit her at that point...
Jenn0 -
Gas, Yeah that happens but after menopause it happens too… But not like on chemo. Your body has been through all these changes and probably still hasn't settled down. I know I had GI issues every time I had General Anesthesia (really hate that stuff) that would take over a month to resolve. The doctors say only a week so they claimed my issue couldn't be from the anesthesia but I saw the pattern. Also you are still doing Herceptin. Any medication is going to have SE. Finally chemo takes a while to get out of your system. Give it at least a year. Some women claim 2 years.0
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I'm still trying out my second MO...in the same practice but different location than my first . I plan to at least finish my last 3 herceptins with him.
He seems very smart, up with latest news and I can see him without appointment each treatment session. Takes his time answering my questions clearly . He even drew a diagram of where I standin the HER2 , Luminal A, B basal chain...
His " girls" , however, are horrendous. Took me 5 calls ..mine.... to establish that I needed an echo and set it up! That bothers me enormously.
Going forward after herceptin how often do you girls see your MO? What do they do? My BS will see me every 6 mos for the first 2 years at least and then yearly for life. As my MO told me...my BS is in charge of my boobs. It's the rest of me I'm concerned no one will be monitoring adequately.0 -
My BS and Onc saw me every 6 months (meaning I saw 1 of them every 3 months) after chemo till the first year of my BMX. Then it was every year (meaning I see 1 of them every 6 months). I think that's for 5 years but not sure. I know I was told I would see my BS for the rest of my life. Some BS don't work that way so you end up seeing your onc more. Not sure when or if my onc will cut me loose.
I see my PS now yearly.
BTW I just thought we triple positives were luminal B, right?
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Thx Lago...
Although the mo said they "believe" when he drew the diagram ...you're right about luminal b.
He drew a pic of a cauliflower like balloon which was the lobule where milk is made. Then he drew a duct that opened from the lobule and ended atthe nipple. The basal cell tumors which are hormone negative form near the base( closest to lobule)..ergo basal..
Next are the ERBB tumors of which HER 2 is one...the ones closest to the base would be hormone negative. Then would be luminal B which tend hornone positive. He believes I and I guess all of us triple positives fall in between basal and luminal b...he said I appeared closer to luminal b. Next and closest to the nipple are luminal A.
I hope I got that right. As you all well know bynow..we are not authorities and I may have screwed it up.0 -
I think there is also some research on the intensity of estrogen receptor expression which has an impact on therapy in triple positive. I can't find the article this morning though!
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Omaz I hope you can find it. I think this is one of the most pressing questions I see on this thread.
Thanks for the explaination Ashla
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nwartlady - are you taking a probiotic? That helped me tremendously with the myriad of digestive issues I was experiencing - started it after chemo, but mid-Herceptin. I tended toward the Big D, before BC even, and the probiotic fixed that.
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I too take a probiotic before, during and now. My problem on chemo was the big C. I also have IBS so I did have issues with the big C if I didn't watch my diet. Animal fats like red meat really sets it off.
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lago - I think I have it at home in the filing cabinet and will look this evening.
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kayb - I would ask about it.0
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kayb - maybe they could do a FNA?
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It could be definitive without being too invasive, and would ease your mind too! Hoping it is nothing, but I am sure it is worrying you.
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FNA is a good idea - can your bs do that for you?
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Hi ladies! Well, I just got back from meeting with my PS! He is awesome! I felt very comfortable with him. He has done several friends augmentations and several friends reconstructions and does amazing work. I kind of expected him to make similar recommendations for me that he did with the other ladies that I know he has done recon on...but, he really took his time and listened and made very specific recommendations. He even agreed when I told him that I want to go much smaller...MUCH SMALLER. I will run again with out three sports bras on! yay! I was a C cup, got augmentation to a D cup, two kids later I am a super large DD cup:( Didn't see that coming.
Ashla-I think my doctors plan on putting me on the same schedule as Kayb. That is what they have told me for now at least.
Kayb-I know I am still in the middle of chemo...but, I have had so many swollen glands...it has made me so nervous. My MO keeps telling me that it is ok and just how my body is responding to things. Just had scans so I know that it is ok, but, it still makes me nervous. I am sure yours is fine also....but, if you are like me...it just feels better to know for sure.
On a slightly similar note...I am half way through chemo and I still have my tumor. My BS says it is smaller and softer and is on track...but, I hear of so many women that had theirs completely gone after...like...one week? Well that is what they say. Should it be gone by now if I was responding well to it?
Ok...off to the BS to confirm the surgery and look over things. I will ask him again if he thinks the tumor is making good progress.
Thank you all for your encouragement!
Jennifer
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kayb - I agree with everyone else, ask for the FNA for peace of mind's sake. My positive nodes were enlarged and kind of achy and apparently one was suspicious looking enough on ultrasound to warrant a FNA when they did my core biopsies preop.
Reassuring for you that your ultrasound was considered normal.
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