TRIPLE POSITIVE GROUP
Comments
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HelenWNZ, congratulations on your port removal. That's a big milestone to celebrate. As for reconstruction, that's your choice to make, not your breast surgeon's call. Perhaps consider having a consult with your oncologist and a plastic surgeon in order to make a decision. Sending support and positive thoughts.
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Kattis894, so happy for you, that your doctor said you are cured. I was also glad to read that statistics are good with your type of cancer since I have the same type. I've been so depressed since being told I'm her2+ and worrying about recurrence, can't thank you enough for your happy post. You made my day, I feel much more hopeful about my future.
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I just wanted to say thank you to all you wonderful ladies, your positive posts have lifted my spirits. I've been so depressed since being diagnosed and reading your posts has helped me a great deal. God Bless you all!
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Hi Helen,
Congratulations on getting that port out!
As for quality of life ... I think that includes as many surgeries as I WANT and the boobs that I WANT.
I have a rule about any medical person I see on this cancer journey. If in their presence I feel the least bit uncomformatbale (and I define what uncomfortable means), that person is no longer on my team.
As the woman who started this forum TonLee said: it is your body and you will have it and the decisions made about it long after the doctors, surgeons, nurses, techs ... are long gone. That is a rough paraphrase.
Go for what you want. Sometimes I think what if this crap comes back. What would I do? I would go back to surgery and get bigger, high profil boobs. Don't get me wrong, I love my reconstruction and it is perfect for my frame but if I had a little time left on the planet, I just might go for the DollyParton style. LOL! And I would eat lobster once a week with butter. Just sayin'
Vicky
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Helen, He would feel very different if it were him or his wife or sister. I would let him know what you want and see if he can provide. I see that you had radiation and that can cause some issues with breast reconstruction but surely he could have had a better approach when talking to you about breast reconstruction. When you are many years down the road, will you regret not having those new boobs? If so ask again and get a second opinion!
Melanie
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Congratulations KB870! Big day for you!
Jam, I'm sorry about your diagnosis, but glad you found this supportive forum. I see that our diagnosis is similar (though I had two small tumors). Hope you are feeling good about your treatment plan. Ask lots of questions here! We've been there!
Hugs from Colorado!
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KB, could you explain why you're not going to take the AIs? You mentioned that your numbers don't make sense to take them and I'm not sure what that means. Were your doctors okay with it? Thanks
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KB...
What great news you bring! Congratulations on finishing.
Vicky
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T_Sue, Thanks for the hugs and support. My doctors scared the heck out of me when they told me about the her2, they focused so much on that that when they got around to saying anything encouraging, it was too late I was in shock I believe. They left me worried about recurrence and that's something I have no control over, all I can do is follow the treatment plan my doctor feels is best for me. I don't understand why with Herceptin around the doctors weren't more encouraging, any cancer is scary and I feel they let me down not being more positive that I might never recur. I'm so glad I found this forum, the positive stories give me hope that I won't recur and can someday not be so worried and focused on breast cancer. I should have had some comfort in knowing I'm early stage and taking every precaution to not recur. I wish I'd had more compassionate doctors.
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HapB- I had to stop Herceptin after about 5 treatments due to a drop in my LVEF. It was put on hold while I waited and checked with Echos every 6 weeks. During that time I started feeling palpatations and went to the hospital where they determined that the palpatations were "normal & not threatening". I think I was just scared. I began seeing a cardiologist who put me on heart meds to lower my blood pressure. He has done different tests to see if he can pinpoint exactly what damage there might be, but hasn't determined specifics. In the meantime(5 months) my LVEF has returned to slightly below normal. I see the cardiologist next month and he probably will request an MRI to further investigate. My blood pressure is great now.
Please note that I am 61 and have a family history of heart problems. I also had taxotere and radiation and wonder how much that affected my heart. I lost 30 pounds in 5 months and became anemic.
There is a department at Cleveland Clinic for oncology related heart problems that you might look into. Hopefully, your heart will return to normal and Herceptin will be continued. My understanding is that they take a break to make sure your heart function returns to normal quickly as it does in most cases where heart complications arise. In my case my oncologist felt it was much too slow returning to the point where we began.
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HapB-As I recall, prior to any treatment my LVEF was 54 and went down to 40 at which point she stopped it. My doctor took me permanently off of Herceptin when it continued to go down to 30-35 even though I had been off for 12 weeks. I think she would have waited it out except that it wasn't creeping back up at all. Luckily it is now at 47, which is below normal but better. I haven't felt bad other than the palpatations and fatigue. Somewhere on this site I read that there have been studies in the UK showing that 3 months of Herceptin provides almost as good protection as a year. Looking back I think I actually completed 8 Herceptin treatments which was half of what I was scheduled for. I still feel nervous about not having completed it and can relate to your anxiety over having heart issues now. Hopefully your cardiologist will be able to improve things for you and set your mind at ease.
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Hi All ! I just had my Port put in yesterday - I'm at the Point Of No Return. I am hoping my MO won't put me on Anti Estrogen blockers until Herceptin is well established. I want to be able to tell the different SE's go with what. So far no mention of taking them.
I've read on different posts - Some fast before chemo - some say eat a little and have something in your stomach - with my treatment course - any suggestions? It will take - what 5-6 hours - do you eat while there? what suggestions? I've only had diarrhea a few times in my life. So I'm not sure what to eat to prevent, while during chemo - No body has given me a tour of what to expect.
Also - How do you prevent your fingernails from 'lifting' - (can't ice - I have Raynauds)
- How do you prevent scabs and zits forming on your bald head once I loose my hair? (I want my head to be smooth like a baby's bottom
Jagger2015 - I am curious about the CBD oil. I tried it (I'm in a state where cannabis is illegal period, and they raided all the health food stores taking away the CBD OIL - then gave it back to the stores to sell 'at their own risk' ) Anyway - I tried it the (Charlottes Web) and it gave me a strange migraine - on the left side of my face. Huh. In what ways does it help you?
Hi Helen - When I was first Dx, on the left side, I told my BS I wanted both breasts gone - not because I was afraid it would spread - but I wanted to go flat, no recon, and didn't want one big droopy breast in the way. She was NOT pleased about taking a perfectly good breast - but I insisted and happy with my choice.
Take care Everyone.
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All - sorry for my absence, have been dealing with a new issue. I experienced sudden left-sided hearing loss and extreme ringing and have been worked up with a head scan and consult with an ENT. I do not have any tumor activity, and the ENT feels this is virus-caused. Very relieved that this is not brain mets, it was a scary possibility, one-sided deafness seems so much less bad, lol! I am now on anti-virals and big doses of steroids in an effort to restore my hearing - so far, not working and I am about a week in. In the middle of this also had a biopsy for skin cancer on my face - but that is not a new issue - I have had many, but this is the first on my face. I will have MOHS surgery to remove the skin cancer after the holidays.
Welcome newbies!
On the subject of Herceptin duration, I believe that HERA looked at 12 months or longer - I think it was 12 months versus 24. FinHer looked at the short course 9 week, but it was accompanied by chemo. FinHer was a very small trial, but did show advantage over chemotherapy alone. The Persephone trial is ongoing I believe in the UK, looking at 6 month versus 12 month Herceptin duration.
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hap - thanks - I am hanging in there - it has been a crazy couple of weeks. Most reduced LVEF, producing CHF-like symptoms in Herceptin users is reversible - hope it will be for you if that is what the issue is. Pre-existing hypertension is certainly a complicating factor, and I understand discontinuing. Your numbers without treatment were better than for many with treatment, so hang on to that thought. I hope you feel better asap!
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SpecialK Good to see you back, hopefully your hearing will come back to 100 percent. Thank goodness no brain mets!
Melanie
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rljess - I too asked for both boobs off but was talked out of it in case I wanted reconstruction. But I believe when the results came back after my mastectomy that was such a big shock at how much the cancer had spread is probably why the surgeon is erring on the side of caution. We'll see how the land lies next yea
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SpecialK,
Keeping you in my prayers.
Vicky
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Hi HapB - I've been following your journey - I just wanted you to know I too live alone and understand how frightening that is.
I actually programmed my phone to call 911 - "Hey Siri call 911" and during the programing 911 was actually called. OOps! what a mess that was. I panicked and hung up (not the correct thing to do) the operator called me back, asking me many questions to make sure I wasn't in danger, then the fire department called, and again went thru a battery of questions to make sure I wasn't being held hostage by an ex - THEN the Sheriff came to my House! How embarrassing - but they were on top of things. I'm sorry your having so many issues. Wishing you only the best. rj
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Hi everyone,
Just catching up from a crazy week.
SpecialK - oh my goodness. Keeping you in my prayers. I have had tinnitus in both ears since my first tx 18 years ago. No hearing loss but I do blame the tinnitus on the chemo. I hope that gets resolved quickly. Glad to see you back.
HapB - I know you are scared to pieces, and have every right to feel that way. I do find that when I'm freaked out, other strange symptoms appear. Hoping you can get back to your normal life very soon. I pray that your heart damage is reversed, most reading says that it is in most cases. We will cling to that. I completely understand your fear by stopping treatment. I am stage 1 as well and know I will feel the same way if I have to stop as well. As someone mentioned in a post above (I read so many, can't remember who said what), your numbers were very good with surgery alone. Cling to that too. Oh trust me, I know it is easier said than done but sometimes when you continue to hear positive words from your breast buddies, it helps.
Welcome new members, this message board is filled with caring women who do their best to answer questions and lend an ear. Those who completed treatment or are considered cured - a big huge yay and high five, hug included.
As for me, Taxol/Herceptin treatment 4 down. Still have my fine thin hair, but more comes out in the brush. Awaiting the big buzz off the hair day. Must be coming soon. Got two fills in each side, now have 270 ml in each. No pain. Back to work for me next week....that 8 weeks went by fast.
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Go get 'em HapB xoxo
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Welcome back to our fearless leader SpecialK. I hope your hearing comes back soon and I am rooting for it's speedy return. Good luck with the mohs procedure. I've not had that surgery but am familiar with the special fun of liquid nitrogen and efudex. The perjeta lit up (and took care of for the most part) my actinic keratoses. Enough about me. Glad you are back.0
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OY Special K. Sorry to hear about your hearing and your skin procedure!
Helen, Congrats on getting your port removed! I still have mine; can't seem to give it up.
KB, Congrats on finishing Herceptin! Yay!
Take it easy, Hap B. Hoping your heart is one of the ones that recovers.
Me, I'm in Grading Hell. I want to finish most of these papers before Thanksgiving!
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Hap, its been awhile since I posted on this board. I just happened to see your post. I had to quit Herceptin right after I went to Herceptin only because of low Ejection Fraction. My numbers dropped from 60 to 40. So I only got it with my chemo. However I take hope in the research that was done to say that the most effective Herceptin was during chemo. My LVEF went up to 59 approximately 3 months after H was stopped. Also, my chemo was cut 25% on ALL treatments after the second one when I ended up in kidney failure. I remember what my oncologist said when I asked him if it would still work if they cut it so much. His answer, and I will remember this forever,
"You have to be ALIVE for any of this to work!"
Yeah. Put everything in perspective for me. Hugs, I hope my story helps.
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Hap - I believe it is 10% or 10 points, but it depends on where you started, as well as the time frame it occurs in. As you have also learned - LVEF measurement is indeed subjective to a certain extent as the cursors for measurement are placed and manipulated by a human during the exam. Reversal of temporary issues from Herceptin usually do take a bit of time - much like moonflowers experience. There are a few who have posted over time on this thread who have not had their situation reversed with cessation of Herceptin - including the OP. She feels that the 30 minute Herceptin infusion was the culprit for her, as an individual.
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SpecialK and HapB, sending you both lots of love! What a difficult time. Please know that we are rooting for you!
Hap, your cinnamon bread sounds wonderful! I too love to cook but baking is so tricky at Colorado's altitude. I've been here for 20 years and I still can't get a good rise. I make a mean soup though. Wish we could swap goods!
KimCee, congrats on getting through your the first third of your chemo treatment! Every day you are a little closer to the end.
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Hi Ladies,
Wow - how quickly 10 pages can fly by when you're not on the boards! I have been extremely busy with a fundraiser I was planning relating to my Christmas charity. I'm happy it's done.
I'm so sorry to hear about your issues, Hapb. You're so right...all this craziness and fright over a very early stage cancer. I could totally appreciate if you stop all further treatments right now. You've done so much for it already. I know so little about Herceptin and the heart other than the fact that I do frequently read about how issues are reversible. I hope you experience this soon.
SpecialK, how scary to lose some hearing. I can only imagine (well, I actually CAN imagine) what it's like to experience something sudden and bold like that. I really hope they can get to the bottom of this. Are you sleeping at all??
Welcome to new members. I will have to scroll back and read about newer ladies on this thread. I apologize that I'm a bit out of date.
Back in August, I had an abdominal ultrasound because I was feeling a bit sick here and there. All was fine. I told them that they would likely see the hemangioma on my liver that they had initially found when I was diagnosed. They saw two hemangioma in August, but when I had a follow up this week, they saw another thing 'pop up'. They think it's another hemangioma, but now I get to wait a few weeks for an MRI. In the meantime, I went back to my initial lab reports from 2016. My liver MRI showed that there were THREE lesions, all 1 - 1.5 cm in size. They were very definite about seeing three and at that time they said these were all hemangioma. 2 on left lobe, 1 on right. So fast forward to August 2017 when they saw 2 hemangioma - 1 on left and 1 on right. Then they see 3 last week. So what I'm wondering about is whether or not the 3rd thing they saw last week was the third hemangioma that was there all along??? I have no idea.
I find I'm doing quite well on the Letrazole, but sometimes I too wake up with very stiff fingers (someone else mentioned this). And of course, I often get up off the ground or out of bed feeling about 90 with my joints. For the past two weeks I've been feeling lots and lots of chills. I'm not sure what that's about. I did have a flu shot last Thursday, but I thought my chills had started before that. Every abnormal thing that comes up, I get freaked about. This is why I've been trying so hard to sort of decrease my presence on the board here. I feel that if I am reading about and thinking about cancer all day long, it starts to send me down my dark paths. I'm really trying to protect myself lately that way. On the flip side, I want to know how you all are and I so appreciate the support and camaraderie here.
I was invited to view logos for this site that the marketing company is working on. That was fun - just a 10 minute thing via Zoom (app). Did anyone else here do that? I appreciated being included and am looking forward to seeing what's in store.
Awhile ago, some ladies on here were talking about vaginal creams? I have the driest vagina ever!!! Sorry for the tmi, but that's kind of why we're all here - to get the real info
lol. Does anyone know of what works other than the usual lubes that are talked about? Anyhow, I'm going on. I hope everyone is well. It has already been over a year since I stopped chemo, and sometimes I can't believe that. Have a lovely evening,
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Poseygirl. Hello, it's good to hear from you! I too have backed off from the boards some, I fare better that way. I have found that after catching up with posts and reading about reoccurrence fears, I was having more anxiety. I even had several traumatic dreams. I woke my husband up one night hollering, my dream was about a snake cornering me and me trying to escape....I couldn't get away....left or right the snake went the way that I went. My husband said he called my name out several times and finally touched me to wake me up. This happened after a night of reading posts. I still come here and give and receive encouragement and check on everyone but, I am careful to stay away from certain boards. ***I use Replens for the vaginal dryness but it is VERY messy! Be sure to use it at night when you don't have to get up again (don't use it on an intercourse night). It helps with the dryness a lot after you use the product regularly, once again though, it is so messy!
Melanie
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I think early on it is hard to stay on the boards all the time. It took me months to finally post. The more the journey is in the rear view mirror, the easier it can be to read & post or at least that has been my experience.
As for the dryness, my GYN prescribed DHEA 6.5 vaginal cream. Not covered by my insurance unfortunately.
Vicky
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I have shared before things that people on my Oncolotgy Team say to me that are just stupid things to say to a cancer patient. When I hear those things I always have a smart comeback (when you had cancer did you xxxxx ) but sometimes I do hold my tongue.
I remember a Treatment Nurse's responses my last day of treatment. I said something like this is it, I am finished. He replied that I would always be with them because I was a cancer patient. He went on about how great it is to always see his patients. I know he meant it well and I did not internally hear it that way. I held my tongue.
I found this article summed up that relationship very well.
https://herecomesthesun927.com/2016/11/14/dear-eve...
Vicky
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NUTRITIONALIST: As promised I am sharing.
My visit went well and she alleviated my worry on giving up all of my beans (because of phytoestrogens). She said that we need to stay away from foods that are inflammatory and suggested I use Dr Andrew Weil food pyramid. However, she said that they advise no supplements (even though it's on the chart). Use only a daily multi-vitamin UNLESS your MD tells you to take something else. For example I was using Vit B6 for neuropathy which my chemo nurse recommended-this is okay. The one exception was Vit D, which she said we can add as many people don't get enough of that.
Reaching and maintaining a healthy weight is important because when you gain weight after a BC dx it may increase production of estrogen, which can increase the risk for BC recurrence.
Good nutrition, managing your weight, staying active AND limiting your alcohol intake can help decrease the risk of the cancer returning.
Limit alcohol because cancer recurrence is higher for women who have more than one alcoholic drink a day. One drink is equal to a 12 oz. beer, a five oz. glass of wine, or 1 1/2oz of liquor.
She said soy was okay but, I still read that it is controversial everywhere I look.
Raw sugar over processed white sugar.
She pretty much said: Unprocessed over processed.
Don't be afraid to tweak your recipes... you don't like black beans? Use a bean that you do like. Don't like spinach? Use kale or vice versa.
In meal planning: Don't like orange juice? Eat an orange instead. Take out the peas if you don't like them!
Other helpful and fun links she gave me were:
https://www.forksoverknives.com/
OMGoodness! The recipe for: https://www.forksoverknives.com/recipes/fresca-bean-salad/#gs.ltJmSZo
Because I love beans! http://beaninstitute.com/ lots of recipes!
Have a great Thanksgiving!
Melanie
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