TRIPLE POSITIVE GROUP
Comments
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Hi all. Moodyblues, bravo for having the courage to show your hair. I don't have your courage! But maybe I can share a laugh. My hair used to be long and straight. Now it is literally 2 inches long and the top stands straight up with the rest curly. If I put a headband around my head like Bjorn Borg, I look like an 80s music video. Think eye of the tiger. I can laugh again anyway.
cherry-sw, sorry to hear you are feeling bad but hurrah for finishing. The first month is worse and then it will get better. Hang in there. We're rooting for you.
HapB, I read your posts and struggle to think of anything to say that would be helpful. I have this image of you in my mind as a strong and fierce New Englander, a special type of person celebrated in books and movies. No one can bring a New Englander down. It's just not fitting. Here's to hoping you get your fighting spirit back and your treatment plan on track. Sending some mojo for you from the Mid-Atlantic.P.S. Your post helped to remind me to take my AI just now for which I thank you.
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Hi girls, sorry I have been out of touch. Back at work FT after last surgery - 12+ hour days again. Yikes, this job and the stress that comes with it is not good. Good news is I am retiring in 11 weeks and 2 days. I have shoulder surgery in 2 weeks so I really don't have that many work days left. I shouldn't complain.
Hapb - thanks for posting the faster aging article. How true. My body feels like I am 80. I'm back to exercising again so maybe that will help. I fear what the AI is doing to my bones. And all the scans. That cannot be good for us. I had 7 scans in less than a year. I am sorry you are struggling with whether to take the AI. It must be especially difficult because you were off and felt so much better. The numbers don't make sense and this confuses me greatly. I am not in as much pain as you or have the heart issues but I empathize with how tough a decision this must be for you. I hope you can find peace in whatever you decide.
Melanie - you look great! Your smile is so warm and inviting. I'm happy your hair is coming back and really glad you are feeling so much better these days. Super news no BRCA, yay! 2018 will be your year for sure.
KimCee - yippee, you're at the finish line with the taxol! You have been endured so much going through BC twice. Your pity party of late is understandable.....feeling miserable and sick all the time not to mention the anxiety this stupid triple positive causes would impact any of us the same way. Maybe the AI is partly to blame? You are stronger than you give yourself credit for and I know you will move forward positively in the days ahead. Sending hugs your way :-)
Cherry - yippee, you're at the finish line too. I am so sorry you are feeling so terrible. I pray your medical team can find a way to give you relief. It may not seem like it now, but better days are ahead. Recovery is a slow process but as we've heard from Vicky, specialK, Melanie, myself and so many others here, we do find a new normal and brighter days are on the horizon. Sending you hugs too :-)
I think and pray for all of you daily even if I am not posting. I wish everyone a good rest of the week!
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Moody, I second what Hap said "your spirit shines through". What a lovely picture.
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About hair - mine came back very slowly after last taxol. It's curlier than it was and I think a little grayer (but I am 71). I stopped coloring it several years ago. A friend who had BC a number of years ago told me that she felt there were 2 full growth before she had her "now" hair.
Last Herceptin this Friday. I'm feeling very uneducated about what happens next other than the AI's. What questions should I be asking? I'm feeling superstitious about my port - if I keep it I won't need it and if I take it out, I will. Not having any trouble with it but getting it in was was painful and stressful. One year mammogram and visit to BS the end of the month.
I switched to femera from arimidex after 7 months. So far, doing better on it. Less joint pain and definitely fewer headaches. I also know keeping moving makes me feel better both physically and mentally. I can slide into being a couch potato too easily and that definitely affects my mood.
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Melanie! You look super duper awesome! Love your new growth. Your head is covered, yippee.
Vicky...my bud. Thank you for your pep talk always. I did not know you were battling this aspect too. Glad you have it under control for the most part. And your hair is way cool too. I love it.
Deni aw thanks for the kind words. I kind of know I am strong, I have to be, but the meltdowns do happen. Taxol ends tomorrow, thank goodness, I am so over done.
Taco, I did super great on Femara, glad you are feeling better. Wish I could do Femara again. And congratulations on last Herceptin...can't wait to post that myself.
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hap - hang in there
moody - you look great
kim - don't judge how you look right now - treatment takes a toll, things will improve later
cherry - start the Claritin the day before, keep taking it for a minimum of several days - take this study info to your docs:
https://clinicaltrials.gov/ct2/show/NCT01712009
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Seeking advice. Has anyone decided to do mastectomy after lumpectomy/chemo. Did my lumpectomy in a hurry after diagnoses. In chemo now. Always wondered if I should have chosen mastectomy (no rebuild) instead. Don't know if I can still do it after the chemo. I saw so many people opts for mastectomy. I just turned forty five at diagnosis time. Desperately want to live long enough (at least another eight years) to see daughter get into college.
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whywhy - here are some links to study data that show that Her2+ patients potentially have a greater risk of loco-regional recurrence following lumpectomy than mastectomy. Across the board for early stagers of all subtypes lumpectomy plus radiation generally equals mastectomy in terms of OS (overall survival), but for the same population, not factoring subtype, lumpectomy plus radiation carries a slightly higher risk of local recurrence than mastectomy so they are not equal as far as DFS (disease free survival) goes.
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Has anyone taken (or is taking now) beta glucans in conjunction with herceptin? The integrative medicine doc at my hospital recommended it based on some preliminary studies of mice (and one of colon cancer patients). But I am having a hard time finding a high quality brand and dosing guidelines. Doc recommended a mass market brand.
I did just find a study that suggests that yeast-based beta glucans are better for this purpose than mushroom based ones, so that helps narrow it down. https://www.ncbi.nlm.nih.gov/pubmed/19106638
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Special K, how much weight do you think should be put on the recent taxol/herceptin study (7 year follow up so far) which shows a very low local recurrence rate (something like 1.2%)? is the study large enough to be significant in this decisionmaking? (I am also trying to decide whether to have a BMX after chemo).
Also, in the study you cite above, only a small % of Her2+ patients received herceptin. Wondering how to account for that in analyzing the data here.
Any thoughts?
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SpecialK, thank you, I am sorry about your MIL, hope you will all have a quite and beautiful memorial. I will read the studies too.
Overall this EC sucks and I feel I will be down for quite a while but will have rads simulation with CT-scans tomorrow, not looking forward at all.
moodyblues, you look great and so much hair growth in such a short time. My hair are still very sparse but I have new eyebrows and lashes, very short but growing
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HapB, SpecialK, Thanks for the notes and the links to the research. Surgeon told me the difference between lumpectomy/radiation vs BMX is small. Lumpectomy did allow me to recover very quickly and function as a mom. Now just thought if there is anything else I could do to reduce the risks a little bit more. I guess it's the human nature to control the uncontrollable. I'll ask my oncologist when I see him again. For BMX, I am also a bit worried about the length to recovery and the potential impact to holding on to my job.
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SpecialK, Thanks for the links. I've only read the first link and it was VERY informative and interesting. Some of it was over my head but many points hit home. I am looking forward to the second link later.
If Resveratrol is so amazing, why aren't we all on it? The doctors don't even mention this. It was listed under the Aromatase Inhibitors section where it said: Interestingly, natural anticancer agents such as resveratrol with documented anticancer property [156, 157] are natural aromatase inhibitors [158].
Bisphosphonates. Under this section (second paragraph) I was totally questioning why the doctors don't mention this to us? For us HER2 ladies it could mean lessening the chance of recurrence in our bones.
The Natural Compounds section was informative as well and I will be looking into the natural anticancer agents such as curcumin, sulforaphane, isoflavones, EGCG, and resveratrol. Not sure about the isoflavones with me being ER+ though.
I have a lot to digest and will to read it again later as I have read it several times already. Thanks again for posting this for us!
Melanie
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Thanks everyone for the kind comments on my hair. I know it's not long at all but, I am so happy to have some hair now! It sure beats being bald especially in this frigid weather!
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whywhy,
I decided to just go with a lumpectomy, even though I knew that there's a greater chance of local recurrence with a lumpectomy. I didn't want to do reconstruction or go flat. I figure that if I do get a local recurrence, my surgeon can do an MX then. You can always get more taken off later, but once your boobs are gone, they're gone.
Since I did the lumpectomy, I've also appreciated that I get more monitoring than I would have if I'd chosen a BMX. Three years out, I still see my MO every three months, and she gives me a physical exam. Also,some women hate getting mammos, but I don't mind them because they have continued to show that nothing's going on in my boobs. Besides, if I did have a local recurrence, I'd want to know immediately.
So, I'm at peace with my decision.
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ElaineTherese, Thanks for sharing your experience!
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Hello All and Happy New Year!
I haven't been here in quite some time but think of you all often.
This is superficial perhaps, relative to some other current questions, but is anybody experiencing a bit of a receding hairline on Tamoxifen? I finished chemo about 15 months ago. I used cold caps and kept about 50% of my hair. It grew back normally and thick. Now after a year on Tamoxifen I'm suddenly noticing changes along my hairline, with shorter less dense hair at temples . My imagination is getting the best of me and I'm envisioning myself in five years ( or 6 months!) with full on male pattern baldness. Not cool. I know hair loss is a side effect (5%) of Tamoxifen but I had always interpreted it as overall thinning. Wondering if anyone has had this. I'm worried. Esp because of all the effects of blocking estrogen where we'd like to have it.
Thank you. Much love and best wishes for a joyful and healthy 2018.
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All,
My husband and I spent Wednesday at a local hospital. A friend was just diagnosed and had her lumpectomy on Wednesday. We went to sit with her husband. A friend of ours just showed up at my surgery to sit with my husband.
I must have gotten really old looking. The staff member at the hospital desk invited us to go back when the surgery was over. I think she thought we were the parents. LOL
This friend is the one that made my buttons and key chain saying "my chemo rocks." She did other things to support us as well.
I guess what I am dealing with is how wide spread BC is. I never knew until it happened to me. At least now we know what to do for others.
Vicky
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Vicky, yes I am amazed as well at how wide spread it is. Remember my post about the three of us at Dollar Tree in the same aisle, same day, same time? How crazy is that? I found out several months ago that a coworker that I had worked with for years, had breast cancer and is still currently on estrogen blockers, I never knew.
By the way, you do not look old, you look pretty darn hot to me!
Melanie
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Thanks Melanie ...you made me laugh!
Vicky
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Glad that I could make you smile Vicky!0 -
Hi All... Chemo #3/ Day 4 (chemo 3 of 6)
Constipated, bloated, fatigue, taking Urea for cracked hurting feet and just plain exhausted.....
I'm confused (chemo Brain) what is the difference between taking Tamoxifen and an AI ? I thought they were all estrogen blockers. ???? The same thing?My MO hasn't mentioned any type of estrogen blocker yet.
Hope everyone is hanging in there... I'll read your article HapB later when I can concentrate - will catch up in a bit.
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What's the definition of pre/postmenopausal? I am premenopausal before chemo. My oncologist said that it's unlikely my ovary would survive chemo at my age(45). 2-3 round of chemo probably would destroy it. Not sure in my case would I be considered pre or post. Read some side effects on tamoxifen and it looks pretty tough with side effects. Looks like AI has less side effects.
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why why,
You can ask your OB/GYN to test your estrogen levels after chemo. If your levels are typical of menopausal women, you could take an AI. You could also do ovulation suppression as a premenopausal woman and take an AI. (That's what I'm doing.) Both kinds of anti-hormonals have side effects. Many women who take AIs complain of joint pain, and some find it to be very debilitating. I don't have that problem, but that's just me.
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ElaineTherese and HapB, Thank you both for all the information! It's scary to think in the long term with the meds. I was hoping for easier time once chemo finishes...
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I am sorry this is a rough time for you. It is going to eventually get better.
See if your Oncologist will approve either one of both of these for the constipation:
https://www.amazon.com/Best-Naturals-Cascara-Sagra...=sr_1_10_a_it?ie=UTF8&qid=1515849533&sr=8-10&keywords=cascara The product is Cascara Sagra.
https://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Dhpc&field-keywords=Super+Colon+Cleanse+Supplement%2C+500+mg%2C+480+Count The product is Super Colon Cleanse.
I am using Shea Creme from 1818 Farms in Mooresville, AL for my hands and feet. This is the only product that seems to really help me with brittle nails and cracked skin. Here is a link: https://store.1818farms.com/collections/most-popul...
Get some rest.
Vicky
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I just wanted to chime in and say I am on tamoxifen and have no side effect other than vaginal atrophy (I know tmi but true...my poor husband!). Lupron was my culprit. It made me feel awful. No more Lupron and feel so much better!
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whywhy - I've wondered the same things about AI's. We are on the same regiment, how are you getting along?
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Hi HapB - I took Lupron shots to force my body into menopause to see if it would stop my cysts from rupturing, It did not, so I got a hysterectomy.
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Vicky and Melanie, it seems I am meeting so many women who have had BC. Never had that exposure prior to diagnosis. I think God brings us all together for inspiration and support 😊
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