TRIPLE POSITIVE GROUP
Comments
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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.0 -
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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HapB, I believe my back pain is not Herceptin related, I have been having problems with my back on and off but it usually got better. Even back in spring I felt that my back was stiff and I found myself trying to stretch while waiting for some documents in front of the copier. Right after the diagnosis I have been crying a lot, got all that tensed and was laying in bed a lot. Two weeks after the diagnosis I got those muscle ties that were not going better with meds or exercises and I started to Google, you know what happened next. I have been going to appointments with PT who recently told me that one of my legs is slightly, maybe a few millimeters but still shorter than the other one and it may cause the pain in my heaps, I was like bring it on, who cares anymore. But I can imagine that Herceptin or even paklitaxel are not good for the bones, my nurse said today that Taxol can also cause bone pain. I have pain in my heals and joints, I had to have it checked, this professor who I consulted the last time ordered it for me but he said that in his opinion I did not need the scan but he was ordering it to give me a peace of mind.
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Hi Marla,
Sorry you are here but glad you found this site and this particular board. I also had my first BC 18 years ago. I lived in NJ at the time and had my treatment at Hackensack vs MSK, which is where I had my first of two opinions. I am currently doing Taxol/Herceptin for 12 weeks and then Herceptin every 3 weeks for a year. First BC was not Her2+ so this is new and a not wanted aspect.
You can read my diagnosis and treatments below.
Hugs to you!!!
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Hi, all -
I've been reading here but this is my first post on the thread. Went to my chemo "teaching session" yesterday and will have my first infusion on Monday.
It all feels pretty surreal. My original plan (based on the info I had from my biopsy, MRI and ultrasound) had been to have bilateral mastectomy with immediate direct to implant reconstruction, recover for a month or so and move forward - one and done. But the surgical pathology showed more cancer and TP, so here I am....
Picked up my prescriptions today, as well as a pill reminder to keep track of them all. I am usually a pretty healthy person so this is completely foreign territory for me.
I'm using a phone app called Journey (which is really designed for journaling) to log all the meds I'm taking, symptoms I'm experiencing, and appointments I must go to. I created different tags for each category, which you can sort by. Am finding it helpful to have all of this in one place, even though I also use Google Calendar for appointments.
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Hi Cherry,
So comforting to communicate with others that have been through this. My family has been wonderful, but this is just the beginning. My tumor was 1.2 cm. And I am Triple Positive; Her2, Estrogen and Progesterone. I was want to stay informed and keep a positive outlook as much as I can. Has anyone been to Sloan Kettering In Monmouth NJ or in NYC?
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Marla712, I am not in US, I live in Europe, just hanging here so to speak. If you do not have any affected nodes your treatment most certainly will be weekly Taxol x 12. I have done my 12 Taxol already but will be doing three EC three weeks apart then Herceptin. Taxol is doable, there is weekly Taxol thread, the ladies there are very helpful, you can also join a chemo group that starts in Nov-Dec. I know exactly what you mean, it is priceless to talk to people who are going through the same thing.
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Magari, sorry that you had to find yourself here but you will find a lot of support on these threads, it has been my lifeline, the ladies here are wonderful and share a lot of information. I completely understand the feeling of it being surreal, for weeks if not for months I felt trapped in a really bad dream but life goes on and you can do it. They really are so much better now to tackle the SE, you will need the meds, do not think about them being drugs, they will be saving your life. Hang in there, you can do it, hugs, Cherry
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Cherry - way to go! I believe you're heading the right path. Nobody knows what the future holds, at least you're doing whatever possible to minimise recurrence.
Marla712 - when I was diagnosed with BC, my BS sent me for bone scan n CT thorax, abdomen & pelvis before prescribing treatment. Have u done these scans? If not, u may want to ask your BS.
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Thanks, Peoy.
I have not had those tests done.
I will ask for them tomorrow when I go see my breast surgeon.
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KimCee,
My first breast cancer was not Her2 either. How are you feeling with your treatment so far? Are you using the cold cap. I'm sorry, but I have so many questions. You are the first person that I've spoken to that this is their second time.
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Hi Magari - I am on the same treatment as you it looks like. I will start my first chemo the day after you on Tuesday. Scary isn't it?
I have all my pre-meds and arsenal of OTC's. I could open my own drugstore. From the wise women that went before me - I plan to Hydrate/Hydrate/Hydrate, eat small meal before chemo, (some fast) take Compazine and Ativan every 6 hours afterwards, (Zofran is given during chemo) Steriods before/after, and have Imodium AD on hand on any sign of the BIg D. (of course have plenty of things for the Big C) Mouthwash mixture of baking soda/salt and water all day long - and Claritin if I take Neulasta - oh, and don't forget the EMLA cream for the port. Am I missing anything?
Thinking warm thoughts of Cherry-sw and HapB and to all my Triple + friends.
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I just took the survey by the moderators - Did anyone know there is a Pill form of Herceptin? Anybody taking it instead of the infusion?
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Rljess - I'm currently undergoing chemo so Herceptin is given thru infusion. My oncologist mentioned that after chemo when I needed to take Herceptin for a year (17 treatments of 52 weeks), it will given as a shot (jab). I've not heard of Herceptin pills.
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Hi Marla,
I am feeling fine so far. I return to work tomorrow. I have done 4 of my Taxol/Herceptin so far. Just buzzed off my hair. I am not doing cold cap because my hair after taxotere 18 years ago wasn't worth saving. Grew back thin and fine. I am icing my hands and feet during Taxol infusion to save nails and hopefully keep neuropathy away.
I went to MSK in Dover, NJ 18 years ago. Oncologist felt I did not need chemo. Had a second opinion at Hackensack, oncologist felt that I was young and said he would recommend 4 cycles of adriamycin and taxotere. That is what I decided to do.
If you are node negative, you will more than likely get the recommendation for Taxol and Herceptin.
Ask all the questions you need to. Members here are awesome.
By the way, my friend did cold cap and she did not lose her hair. She did taxotere for her breast cancer number 2 and was very worried about her hair and taxotere. She was first diagnosed in 1999 like me. She is her2 negative. Another friend had first bc in 1996 and was her2 negative. She and I got it again this past July. She is her2 positive this time too. We are doing the exact same treatment. She is doing treatment in Hackensack. I know you are from NJ so I am sure you heard of Hackensack
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Marla,
Sorry to hear that you're dealing with BC a second time! There are a few different chemo regimens that triple positive patients get. Sometimes, it depends on your oncologist. My oncologist recommended Adriamycin + Cytoxan (x 4) and then Taxol (X 12) + Herceptin + Perjeta. But, if I had had heart problems, she might have recommended Taxotere + Carboplatin + Herceptin + Perjeta. (AC can be tough on the heart.) Of course, if my tumor had been smaller and I didn't have nodal involvement, I might have gotten Taxol (X 12) + Herceptin + Perjeta.
Good luck!
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Agree. I have amazing insurance through my employer but the oncology staff enrolled me in a coupon program of sorts for Herceptin. It is not needs based. Thrilled my oncologist proactively enrolled me. I honestly wouldn't have thought there would be a non-needs based program out there.
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rljess, your chemo summary was excellent. You were a star pupil in your class. For our new participants here, I'll add a few more:
1.) Other than constipation and nausea, sometimes the digestive ailment from chemo is acid reflux. In that case, one or two acid reducers may be necessary. Pepcid and nexium, for example, are prescribed to cover that. One is long-term and one works short-term.
2.) The plethora of drugs to deal with side effects can be overwhelming. If you have been healthy until now, just the sheer number of pills you might take will leave you incredulous, but they do help.
3.) Some women can save their hair through use of cool caps. Losing your hair is traumatic. I finished chemo in May and my hair is now 2 inches long. I had long straight hair. It is now curly and about 2 inches long. I still feel a shock when I see myself in the mirror.
4.) There is no shame in taking anti-anxiety or anti-depression remedies. Even if you have never taken them previously, you may need them now.
Finally, I would not have made it this far without the support of friends and family. Equally important was the fellowship and kindness of everyone here. For that I am today very very grateful. Again, for our new triple positives, I hope you find the same comfort and support that I have experienced.
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Peoy, Herceptin comes either as an infusion or a subcutaneous injection, I receive it as an injection, but I now I had to stop Herceptin while doing EC, I will resume it in January.
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cherry- happy to hear your bone scan results were good. I pray your infusion goes well so you can keep moving forward.
Marla, so sorry you have cancer again. This is a great place for support and inspiration.
Peoy and Magari - welcome to our group. Triple positive is an overwhelming diagnosis initially but the support from everyone here makes the journey less scary because we are in this fight together.
My treatment was different than others on this board....I participated in a clinical trial and did Herceptin and Perjeta infusions every 3 weeks for 6 months, then had Unilateral mastectomy with immediate DIEP recon. I finished a full year of HP Aug 30. No chemo or radiation. I had a great response to treatment, clear margins and nodes with only a few cancer cells left in the breast tissue. I accepted the risk of not doing chemo and am at peace with my choice. Thoughts of recurrence do cross my mind but I rely on my faith to stay positive. I am happy with my recon and have revision surgery next week. I take an AI Letrazole daily which causes pain and a few other annoying SEs. Things do get better eventually albeit slowly. I have learned to have a lot of patience with this cancer business.
Wishing everyone a very blessed and Happy Thanksgiving if you celebrate and a blessed day if you don't. Hugs to all
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