TRIPLE POSITIVE GROUP
Comments
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CindyLooWho,
It looks like you are in the right forum as it appears you are triple positive. We can all agree that the cancer dx is not good but I don't agree that being triple positive is not good. Years ago the Her 2 pos part was bad news but since Herceptin was developed and approved our treatment our outcomes are among the best. We have more treatment options and more weapons. The vast majority of new treatments are piggy backing off herceptin.
The bad part is that for most of us our treatments last one year at least and most of us need the works.....surgery, ports, chemo, rads and hormone therapies. The good news is that all those therapies seem to help most of us.0 -
CindyLooWho
"After basal-like cancers, and luminal A and B cancers, the fourth type of breast cancer is what the researchers called HER2-enriched. Breast cancers often have extra copies of a gene, HER2, that drives their growth. A drug, Herceptin, can block the gene and has changed the prognosis for these patients from one of the worst in breast cancer to one of the best."
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Cindy loo hoo- I am so sorry that you are here. None of us want to meet this way. But, you will find amazing comfort and information in this group. Rest assured you have come to the right place.
Ashla- great article!
Rosem- I hear the aame stats. I am going to choose to the better ones and hope the others are outdated. I think (might have chemo brain) Lago has referenced this before just can not remember the specifics.0 -
Thank you, its not the outcome that has me so upset, its the treatment. They kept telling me the likelihood that i will need anything beyond hormone treatment was very low. I am prepared to have BMX, no issue there, but I am terrified of rads and chemo.....
I have never been sick, ever and I don't know how to deal with this. And once you lose your hair you may as well wear an "I have cancer" tee-shirt and then everyone knows and i don't know how to deal with that either. I'm hysterical as i type this...
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Cindy - It's important to deal with one thing at a time. Focus on the next step, just the immediate next step. What is the immediate next step for you? That is the way you get through the treatment, one step at a time.0
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Ah Cindy my heart goes out to you. As I am sure everyone's does. We have all been there...for me, not long ago...Omaz is totally right...don't think to far ahead and just take it one step at a time. Treatments are very individualized and your team will take everything into consideration as they help you make choices along the way.
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CindyLooWho...
You don't know what your treatments will be yet. You appear to have a very, very small tumor caught very, very early. Not many of us in this forum are so fortunate and we're all in varying degrees of getting healthy again.
Again....the important thing to remember is that you have a small tumor....excellent...stage 0 excellent....and for th triple pos girls there are lots of lifesaving treatments.
There are also ways to save your hair. Have a cup of tea and take s ome deep breaths.
There are so many friends here and elsewhere to help you through all of this. We've muddled though and so will you with a little help from your friends and alot of help from our medical team.0 -
Sol- yes! I forgot. My bad:) I did read that. I think that could be part of it. You are right though...better than the alternative.
Did I miss that you are on a pertuzamaub trial?
Dance-yes, thank you for the articles!!! You are on it!
On another topic...very delicate topic...can anyone with any experience with the big "C" and all of those additional side effects PM me if you feel comfortable talking about it. I am sure it is TMI...sorry, I have been Dealing with it for weeks and need some ideas. Sorry.0 -
Jennifer404,
If it's the constipation C I had a problem as well. It was in fact the only major SE I had. I used stool softeners but it took me 3 infusions to realize I needed to take them before infusions and continue for at least 5 days. The worst started day 3 after treatment. I ate all the right foods and kept hydrated but I needed outside meds. I believe others used Miralax.0 -
Hey Ashla! Thank you for responding. I think I have let it get the best of me...I am taking myralax 2x a day...4 stool softeners and do ok on fluids.. Unfortunately it has become extreme already and now I am suffering from the terrible side effects of constipation..ie bleeding. .I looked for a thread on it and can not find any info beyond what I am doing...yikes!!! I still have 5 more weeks of chemo and then surgery which is not gonna help:(
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Jenn404...
There are many others here who had it worse than I did and should come long to give you more guidance. Wish I could remember who.
I have never had that problem before or after . Never knew how miserable one can feel .
Good luck.0 -
Key words...appears to be. They do not have a clue of the size, and there are now two spots of concern. It just seems like every time I turn around its more not so great piece of news. I'm terrified to see what the final path after surgery is. Meanwhile it's been a month and I'm no closer to what the plan is. I'm a project manager one step at a time only works if the steps are plotted out and I know what the tasks are.
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Cindy welcome, but sorry this is the place u don't want to be, but it's good to be. I think a lot of us understand u'r terror--its hand and hand with OMG no and I can't do this. But somehow u do it and tho not fun it's not as u expected. And as u go thru this u really don't have the time to feel terror anymore--u'r made to feel hopeful and if u'r team is the right one they will sooth u'r fears and hurts anyway they can. Take deep breaths and know u'll no doubt have options and u will start to be organized in u'r planning and don't google alot now, just wait for the Drs. to decide what course is best for u. And they will work with u. But unfortunately u need patience but if it's a month now that u got the news call u'r Onc. and see what's going on and u do have a Breast Surgeon and call him/her too NOW. And ask u'r questions becuase u have to plan for work. And let us know
Jenn404 Call ur Dr. and get something stronger have u tried suppositories, I know this can be very painful which sometimes people forfet--I don't have this problem, mine was and is explosive D anytime and anywhere no warnings. so I'm alot of fun to be with. But ur's hurts alot and that worse, I have no hurting. But call and see what they say. Alot of women get this, so there has to be answers for it. Sorry this might be embarrasing for u, but it's not for me after all I've done alot of things in front of friends and complete strangers and even at work--when I worked. So I don't blush anymore LOL
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Cindy - Do you have surgery scheduled? When is the next appointment and who with? I saw my breast surgeon first for a couple times, medical onc for chemo/herceptin and rad onc for rads. The rad onc was instrumental in helping me make the lump/rads vs mastectomy decision.0
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CindyLooWho...
True..it's the unknown that is most frightening. If they told you the likelihood of needing anything other than hormone treatment.....obviously before HER 2 became a factor....it seems that pobably the tumor...tumors are small. The smaller the tumors the better the prognosis in most BC's. That is very good news.
When you meet with the BS you will have the start of the plan. It seems that you will have surgery first and then if need be ..chemo. I had TCH chemo first and then lumpectomy afterward. If the tumor is small and the stage is 0 and you have no postive lymph nodes you might not need rads.
Waiting as long as you have is hard. I knew the basic plan very quickly.0 -
Soltantio...
He has to order an ekg or some other test once you complain about palpitations. I have PVCS and noticed them more after menopause and during treatments. The cardiologists have never been too concerned. They can be caused elctrolyte and mineral imbalances and deficincies.
But your doctor should know. Good luck.0 -
jenn404 my C was so bad i had to go to emerg...i was so constipated i got a fissure (TMI i know). They gave me a suppository and an oral laxative (so yes both ends) and it worked within 1/2 hr. It was pretty awful. Ask for something stronger, they have laxatives that are better than the over the counter stuff - if you are bleeding that means you are already pretty far gone so you need the "big guns".
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Cindy,
The next "step" is:
1. surgery. There are a few decisions you must make about that. First, what type. Mx or lump. Once you determine that..the next step:
2. (if mx) is what you would like to do for reconstruction. I encourage you to see a plastic surgeon BEFORE your Mx. Often times they are able to incorporate reconstruction surgery with the mx so when you wake up you're not flat and can already see progress. Plus it is one less surgery to deal with.
3. Do you want a SNB or a full axilla dissection? I recommend you research this WELL, because with full axilla dissection comes the risk of lymphedema. And if you have a positive lymph node, they will likely recommend rads. Some docs rip out the axilla and do rads, but that's overkill as the latest studies show. (You have to weigh the potential effect on quality of life with Drs desire to rip it all out.) Once you've made those decisions, research them here, talk with women who have been there done that. (Most of the time it goes, surgery/reconstruction if doable, chemo, rads, hormonal stuff. Some women have the chemo first.)
4. Surgery.
5. Wait for path report. If you are HER2+ there is a high probability you will get chemo. All the women here have done it. You can too. It's not what television makes it out to be....and is doable. Lots of women continue to work right through chemo.
6. Radiation. It's not a guarantee even if you do chemo. Only likely if you have positive nodes. I had radiation, and it isn't horrible. You can do it.
7. Losing your hair? Pfft. I PROMISE by the time you take chemo (IF you do!!) losing hair will be so far down on the list on big deals you'll wonder why you ever let it be the center of your concern. And guess what? HAIR GROWS BACK. AND there are these nifty little things you can wear during chemo to keep your hair if you are really set on it. Some of the ladies here have used them with great results.
Take a deep breath. Millions of women before you have already tread this path. We are all on it, and we'll help you every step of the way.
This is a roadblock, NOT the end of the road.
Let us help you with the detour
Edited to add: There will likely be a few other things that crop up between these milestones. My recommendation is get a second opinion ON EVERYTHING...that way you know your options and not just the "standard" ONE particular Onc gives.
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No surgery scheduled yet. I see the surgeon again on 10/4. I already know I want BMX. I met PS and loved her. I do not have an oncologist yet ( I know who he will be just haven't met) because they said I will see him regardless of what surgical decision I make. I think they didn't want to overwhelm me. I'm sure the surgeon was planning on telling me about the HER2 when I see him this week.
I do not have tumors. Nothing that can be seen or felt. Just two areas of f'up cells. The excision area recommended for the first spot is 1.7 cm. the second area the path report was not conclusive, but highly suspect.
I am 49 and very healthy. Never been sick, ever. All of the treatment options and side effects and potential damage to other body parts is so completely overwhelming and terrifying. I guess I knew that this is something that you never get to stop dealing with but it just really hit me today. My cousin just went thru the exact same thing 3 years ago so she is great support .
Hair is a big deal and it's always going to be. I spent the last 2 years growing it, it has been short my whole life. I just lost 20 lbs because I wanted to feel and look good about turning 50 next year. It seems superficial but I care about how I look and being the cancer girl is not in the plan. I'm sure I will get over it, but not today.
Thanks for listening I think today is just a bad day. I wish I knew a month ago that the life I knew was over forever...0 -
Cindy - if you have DCIS, like Kayb said, you may be good to go with mx, possibly rads depending on the margins and things. Just because DCIS is HER2+ doesn't mean chemo and herceptin I don't think. There are some excellent threads that discuss this in some detail in the DCIS section.0
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Nope you are right. The surgeon did warn me that stage 1 would be a possibility, but he was not concerned with more than that. Of course he wasn't concerned about HER2 either. I guess I just wait, some more.
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Cindyloo... That is pretty much how my process went, except, I went to my first oncologist interview expecting to hear I just needed bmx or lumpectomy and tamoxifen to find out that the BS office had missed that the fish report wasn't back, and it was by the time I got to the appointment which had already been scheduled. After that appointment, I had a big meltdown in Outback Steakhouse with my son and husband. My son (who was 26) was freaked out, poor guy.
Dance...when I was reading all those reports on some other sites, I took it that two years didn't seem to be any more effective than one, marginally so, but that they need more study on the 6 months versus a year and that until they know more, the standard will remain a year. One of the ESMO twitter feeds linked to a doc who seemed to be saying that there isn't enough difference to make them feel comfortable. So...don't give up hope! I am just glad they didn't think two years is better. I would hate to think we would all need to go have our ports put back in and get another year of herceptin.
Mstori...why won't they let a person be with you? That just seems wrong. At my place, almost everyone had somebody. Well, except me. DH came to the first one and I realized that it wasn't that bad, so I went on my own after that. I kind of enjoyed the three hours of peace. I always booked the earliest appointment as I almost always could get one of their little private rooms, rather than sit in the main room.
I only had taxol, so can't speak on the others, however, hair thinned considerably, but enough that I almost made it through three months of weekly taxol before resorting to the wig. Then after chemo finished, three weeks later, it all came out. Go figure. I think the weekly infusion maybe helped it thin more slowly as I wasn't getting it dose dense.
On icing, no one did it at my place ever, except me. I had two big neoprene lunch bags and two small. Put bags of peas in each one and and zipped them around me feet and hands. Never had a nail problem. Kept it up with herceptin, although my doc said there was no proof that icing helps herceptin se. Toward the end, my nails got really thin and broke off really low, with some lifting. They are just now starting to recover. So I say ice away. Give those men something to talk about.0 -
Cindyloo, hang in there. Waiting is the hardest. You will Do what you need to do and thrive! Might get a bit rough, but you can do it.
Bummer on the Herceptin research re, 6months vs year. I was hoping for a strong equality cause I am off of it halfway. On the other hand, two isn't necessary so that means I got half the recommended tx, not just a quarter! And it didn't say it was worse, just not proven to be equal. So I will.not get too upset, just dissappointed.
Lago, you will be a great speaker. just remember kiss! LOL
MsTori, I always had someone with me; until Herceptin alone. That seems to be so wrong, but I suppose they may be worried about infection, although if you are out to go to the infusions, you are exposed to people anyway.
Board was so busy I know I missed people, so, To everyone, much love.0 -
CindyLooWho the news might not be as bad as you think. If you are Stage 0 DCIS meaning you don't have invasive cancer that is great news. DCIS many times is HER2+ but doesn't always stay HER2+ when it comes invasive. I think at this point you need to have your onc interpret your path because this might be a lot better than you think.
I don't think they give Herceptin or chemo for non-invasive disease unless your nodes are invaded… but DCIS, although non-invasive is complicated. I would recommend tracking down Beesie. She's the DCIS guru on this site. My knowledge is lacking in this area. DO come back and tell us what she says.
BTW I was 49 when I was diagnosed too. In the best shape ever with no health issues. I wasn't taking any meds. Finished chemo 2 weeks before my 50th birthday. Look at me now. I'm 51 and look great. (avatar from late August). Here's a link of my hair growing back: linky
Jennifer I took Metamucil 3X a day, ate dried apricots and beans and NutraFlora. First episode I got hemorrhoids. Treatment 2-6 started the Metamucil the night of chemo. Things still moved slowly for 4 days but still moved. Colase never worked for me. I agree call your MD. I know I would have called my onc if I didn't move one the 3rd say because I couldn't even walk properly. I was not bleeding. ALWAYS call if there is bleeding.
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Thanks everyone for your votes of confidence. They said I did great. If you guys are interested in my "speech" I can post it. Just let me know.
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Post it Lago...
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Fluff- what's that song?this is a mans world...lol! It's a small, dank, 10 chair treatment room, with all chairs in a big semi circle that face towards center of room where the nurses desks are. Mostly men in the room. Old recliner chairs. Windows up higher behind the recliner chairs. Lol! They said because the room space isn't very big, there are no room for visitors. My mom can come in and check on me and switch out my ice bags if necessary. But not stay in room. VA at Gainsville.....not to mpressed. But it's the same drugs I would get elsewhere and it's free. So, I will persevere. Between SpecialK and my mom though, there will be changes coming soon, I'm sure! Lol!
I went out and hot all my chemo supplies. 4 neoprene wine bags to place over feet and hands, reusable ice cubes, lotion, fingerless gloves and toe-less socks. Haha! My mom cut and sewed ends of men's socks. Need a Tervis tumbler with handle and I'm set!
Okay, they called me today and I am set to get my power port put in on the 11th at 7am. I don't know why, but I'm more nervous and scared about this than my other 2 surgeries. I'm dreading it! Hopefully echo that day too, then first chemo TCH tx on 12th.
Lago- your gonna rock this speech!0 -
Jen404 - And anyone else needing help. I got a recipe from my PC doc for something called a "Brown Cow" for constipation when suppositories, softners, laxatives etc don't work. Here it is:
6-8 oz of Prune Juice, stir in 30cc of MOM (Milk of Magnesium). Warm it up and add 1/2 tsp of butter and gulp it down. Not the tastiest (and I hate prunes in any fashion). But I only had to use it once. I had Diverticulitis Dec 2009 and had just gotten out of major surgery for it. So of course from the meds with surgery and antibiotics and pain meds...I was constipated and scared to death. Then the BC hit and the chemo...so...Brown Cow for me. Drank it once during chemo and after that, kept hydrated and took stool softners, ate lots of apple sauce, etc. No harm in trying it.
Praying and sending positive healing energy to everyone!
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Premature ventricular contractions. More than 10 years ago I had surgery for a uterine polyp. Prior to surgery The anesthesiologist asks me" did you ever have a heart attack Because you have irregular heart rythyms ?" well I just about had a heart attack. I went thru the holter monitor and it showed PVCS. My cardio said if it bothered me he would give me medication. I said no thanks and I don't even notice it most of the time.
I had an issue with my preop ekg as well in March. Anesthesiologist didn't like what he saw and I needed cardiac clearance. He told me what was wrong but I didn't understand. Had an echo and the cardiologist gave me clearance with an EF of 60. With herceptin they have to know about these things.
I know it's scary but it make not be a serious issue. Are they going to do more tests?
It's good you are being monitored.0 -
Here's the speech. Someone at ACS did tape the entire press conference. If I get the video I'll post that too.
-------------------------------------------------I am the family history.
I never even thought about this happening to me especially at my age and with no family history. I had no health issues. I was not taking any medication. I felt fantastic.
But I was sadly misinformed and lacking in information.
If I had been educated to the level I am today about breast cancer I know I would have caught this earlier.
I did have some risk factors but I didn't know about them. I did have some earlier signs but I didn't know they were something to be concerned about. I did have a scare 4 years prior but everyone said it was nothing. There was no follow up. In my mind no big deal because I had no family history and I felt great.It's also not just about the lump. No one ever felt a lump even though my tumor was very large. It's about any changes your breasts.
Education is one of the main missions of the American Cancer Society. This is one of the reasons why I walk for ACS. Women need to know more.
I've learned so much from the American Cancer Society especially the website. Being diagnosed is the worst part of the journey. Why? Because of all the unknowns. You assume that your life it about to end. The more I learned about my disease the less doomed I felt. Without the ACS site, which is filled with easy to understand, up to date information I think I would have been lost.
There are many non medical issues that your medical staff won't be able to help with. I lost all my hair and had to get a wig. I knew nothing about wigs but ACS provided me with a free wig that looked perfect.
I had lost my job 5 months prior and cobra would run out before treatment ended. ACS informed me about some of the options that may be available for me.
Another ACS program that I took advantage of was the Looks Good Feel Better Program. This program teaches how to care for your skin, apply make-up and more so you look better during chemo. I swear I was the healthiest looking person in the chemo room thanks to this program.
So why did I get involved? Because the message isn't getting out. Women need to get their mammograms and know what all the signs are so they can catch this early. I had to go through a lot of treatment. I feel fine but all of these treatments have side effects some long lasting. I now have lymphedema, a condition I will have for life that requires me to wear this sleeve.
Many of these treatments may have been avoided if my tumor was found earlier and therefore would have required less treatment.I volunteer because I want the ACS to continue to educate and help others like they helped me.
I walk because I want more people to celebrate more birthdays... Just like I me.
Thanks you!
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Soltantio, my EF went from 59 when I started chemo to 48 when the stopped Herceptin because of it. My cardiologist is not worried, wants me off H but not too worried otherwise. Said he would be surprised if I even noticed anything different but maybe a little tiredness. I was so wiped from chemo I never did notice anything. Signs he told me to look for and to call Jim if: swelling, especially of the ankles and feet. Shortness of breath with NO exertion, feeling of pressure on chest, and general weakness. And of course the regular heart attack warnings, like pain radiating out to your ARM, etc. BTW, I have a pacemaker and a murmur, so my cardioligst knows me. my onc just wanted confirmation that he was aware too. They Do want to change one of my blood pressure meds though.
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