TRIPLE POSITIVE GROUP
Comments
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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.
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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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t-sue - thanks!
posey - still deaf, not really sleeping, lol! My last day of steroids is tomorrow and I see the ENT and do another hearing test. Not sure what the future holds as far as full hearing restored, but I will proceed forward whatever happens. Sorry about your hemangioma deal - I am willing to bet one of them was not visualized. One of the dangers with scanning is that things are discovered that are not connected to cancer and then must be monitored and do produce angst. Radiologists like to call them "incidentalomas" as they are generally benign issues that we would have been blissfully unaware of otherwise. My DH had this happen - abdominal scan for one-sided pain which turned out to be diverticulosis that was irritated by too many healthy nuts and seeds, but they visualized the lower lobes of both lungs in the scan and found numerouis nodules - some above the size threshold for malignancy. They remain unchanged over a few years of scans, but still require monitoring. We had the humorous exchange where he said "I have cancer", and then I said "no, I have cancer" and then we started laughing! As far as letrozole, move as much as possible, but know that some stiffness after a lack of activity is pretty par for the course. I have found an anti-inflammatory diet has helped with this too. On the dryness issue - some oncologists will prescribe topicals, but I have seen a variety of solutions on this site. One of the safer ones it seems - get some coconut oil and roll it into little pea-sized balls and freeze them. Use them daily to maintain moisture. I can't personally testify about how well it works...
hap - hang in there and hoping things settle down for you.
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specialk- so sorry to hear about your hearing loss and the new skin cancer. I will say extra prayers that the steroids restore your hearing and skin cancer is minimal.
Hapb - glad you are feeling somewhat better since off the Herceptin and with new meds. Hang in there
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Vicky The DHEA 6.5 vaginal cream, is that by rx only?
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Vicky, Great link! Spot on. Thanks for sharing
Melanie
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deni - thanks! The skin cancer thing is a constant in my life - I have had more than 35 of them - but this is the first one in the middle of my face. I had one on my ear last year, but the scar is covered by my hair for the most part. I have been fortunate that with one exception, they have been superficial basal cell cancers. I go to the derm every six months so they usually catch them early. I had the first one at the age of 35, and have stayed out of the sun since then, but they just keep coming. Oh well, not a major problem! The hearing thing is a bit more problematic, but I am hopeful!
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Chiming in here to suggest you visit this thread "I want my MOJO back" for tips on vaginal dryness. Check out the original post !
e.g.
Member suggestions to improve vaginal moisture:
Coconut oil works best as a moisturizer (freeze small balls to make suppositories)
Vitamin E suppositories
Almond oil
Replens long-lasting moisturizer
Luvena vaginal moisturizer
Shea butter melted into olive oil at a 2:1 ratio
Cocoa butter
Olive oil
Gynatrof gel
DHEA vaginal suppositories
Tip to use an applicator to insert moisturizers and apply a few times a week.
Member suggestion for lubrication during sexual activity:
Astroglide Natural (free from glycerin, fragrance, flavorings, and hormones)
Slippery Stuff (free from glycerin and parabens)
K-Y warming Jelly
K-Y Sensual Silk Liquid (paraben-free)
K-Y Liquibeads
K-Y UltraGel (paraben-free)
Astroglide, X (silicone-based)
Platinum Wet (silicone-based)
Replens silky smooth lubricant (silicone-based)
Sliquid natural lubricants (free from DEA, gluten, glycerine, glycerol, parabens, PEG, propylene glycol, sorbitol & sulphates)
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specialk - you are always so positive despite all you have been through! I continue to be inspired by your example.
Melanie, thanks for sharing the nutrition information. I really like the forks over knives website. I stay motivated with new ideas so this is really helpful!
Coachvicky, I enjoyed the article you shared. This article should be included in a training program for anyone working with cancer patients, especially receptionists and volunteer staff that may not have formal medical training. I haven't experienced dumb remarks from the medical staff where I get treated but I have had a few OMG you didn't really say that from family and friends. I tell myself they just don't know any better but it still hurts. No amount of explaining will get them to understand what we go through as cancer patients and I appreciate that the author of the article had the courage to own her past behavior and apologize. -
Thank you Melaine for the nutrition info.
Thank you Moderators for the info on our "private parts." Who knew so much was available!
To All ... Happy Thanksgiving to those who celebrate. Happy living to everyone.
I am off to start cooking.
Vicky
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Hi everybody, I have not been posting for over a week but I was reading all your posts, cannot stay away from these boards.
Welcome all new members, these boards are my lifeline, I would have not been able to handle it without this group. I probably had but I honestly cannot imagine how.
SpecialK, welcome back, how awful to lose your hearing just like that, when you have mentioned a possibility of it being bc-related I caught myself wincing, thank God it is just virus, hope your hearing will restore soon. I am sorry about your skin cancer, hope you will not have any again.
HapB, your cinnamon bread sounds wonderful, I have been cooking a lot the past days, will post on So, what's for dinner thread later. And never under-estimate your cat, their purring is so soothing.
PoseyGirl, I hope your MRI will go smoothly and come back clean, it is good you are trying to take a break from the boards, I understand it completely.
moodyblues, thank you for the nutrition info, very valuable.
T-Sue, I never thought about bread not to be able to rise the same way on elevated grounds, it sounds so logical. In Sweden, they cannot have raised dough behind the polar circle and therefore we have several brands of polar flat bread, my kids love it, I always have it in the fridge.
ElaineTherese, the Grading hell comment, I just imagined you with a bunch of papers similar to what my 11-year-old turns in, poor you, the work of teachers is so underrated.
Coachvicky, that post, I will sign under every word, I understand that it has been shared so widely now and translated to three languages, I will print it and give it to my cancer rehab counselor. Today I sent it to my manager, we were just talking and I mentioned it. I was so touched that he red it at once and replied to me what part has left the most powerful impression. We are the same age so it was that paragraph about the children.
I did not post anything because I was waiting for my bone scan and after I have done it for the results. I have been having this pain in my back since the diagnosis and even though they told me that it must muscular it did not go away with meds and training, so I have been offered a bone scan. I did it last Friday and by that time I was in a nearly catatonic state and thought how am I supposed to wait for the results in this condition. So I was so grateful when the tech just said: get up, you can relax now, it looks very well, I just burst into tears and went hugging him. He was from Iraq but he handled it with grace. He said that a doctor would look at it but so far it looked really good. His words calmed me down but today the nurse has confirmed it to me and it was such a relief. I do not need to say anymore about the fears, coachvicky's post said it well. I hate that it has become a part of my life and I find myself here but what can I do.
I had my EC preparation meeting with the nurse today, on Monday I will have my first infusion, I do not to do it because I feel I just started to feel better and I have this extensive peach fuzz on my head and on the very top I have like ten hair straws that are maybe 2 cm long and after EC all of it including my eyebrows and eyelashes will be gone again. My head started to clear the second week post chemo and I can climb the stairs or go up hill without catching my breathe. I am not looking forward with other words but as they told me today if I will feel really bad I can stop after the first or second infusion. We will see.
Happy Thanksgiving to you all.
Cherry
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Hi Everyone,
I am new to this or any group. I had breast cancer back in 1998; lumpectomy and radiation. Handled it well. Now last month we found another lump, same breast. I am 59 years old. They feel it is a new breast cancer. Had my mastectomy a week ago today. I just received a call from my doctor from MSK. The pathology results are Her2 positive, estrogen positive, progesterone positive. I meet with the doctor tomorrow to remove my drain and go over the pathology. She did say on the phone she has no reason to believe the cancer had spread.
I am just numb this time. Has anyone had the same pathology results and maybe can suggest the questions I should be asking?
I wish everyone a great day today. Hope you're all looking forward to a Happy Thanksgiving with family and friends.
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Marla712, sorry you find yourself here but this is a very supportive group for women who are ready to give you some piece of advice, lend an ear or a shoulder to cry on. You did it once and you can do it again, we have all been there. If your bc is TP you will need chemo and Herceptin, if the tumor was smaller than 2 cm you may only need weekly chemo. Just listen to them tomorrow about your treatment options and ask them why they have chosen it and not another one. You can always ask your questions later on and there is a lot of valuable information on these boards. Cherry
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Hi HapB,
Thanks so much for your reply. I did not need chemo last time. In fact, the doctor did not want to suggest any treatment beyond radiation. Just don't know what to ask, exactly. I guess I should look back through the posts to see how others are dealing and conquering it. Also, I can look up the side effects of the three treatment medicines.
Does everyone get the same type of chemo?
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