TRIPLE POSITIVE GROUP
Comments
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Hap, I hate the article, truly do, very depressing! Thanks for sharing though, it gives me more determination to treat my body good!
I am thinking positively on this though as I usually try to do. Yes the long term affects of chemo on our bodies will exist BUT, we know better now and are exercising, eating healthier, staying away from excess sugar, eating less processed foods, abstaining from alcohol (or at least cutting back), taking in foods that add benefits to our bodies and getting more rest. We are taking better care of ourselves now than we did before BC so, maybe....just maybe we will not fare too bad. If we were still pre-cancer we would continue to indulge in all of the things that were not healthy for us. Unhealthy lifestyle behaviors in general contribute to early aging and we as Americans (as we get older) tend to get sloppy with our eating habits AND lazy physically. I say we have a jump on getting ourselves healthy again!
Just a half full perspective. Here's to our new lifestyles HapB!
Melanie
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I don't get it either, Moody Blues. I do know my MammaPrint reported if I do chemo and the 5 year plan my non-recurrence is 94.6%.
Thus my decision to get an out-of-state second opinion to better understand (from a new MO) why this treatment and if there is anything else I should be doing. My current MO wrote in his notes that my DH and I were "shocked" to find out I needed chemo. Well, yes we were shocked. My Surgeon was surprised also. We thought that was why I had the BMX to get rid of the cancer. My lymphs were negative. So the current MO says that the chemo is to prevent it from coming back.
Vicky
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Vicky, when you get an answer I would love to hear the response from the new professionals. It's like treating an infection that has been gone for months with an antibiotic. It never made sense to me but, I followed the protocol never the less because I was told it is necessary. When this person brings the subject up, they have valid points and I have the research saying I need 'these' things to stay healthy BUT, I agree....the cancer is gone so why the treatment?
I look forward to hear what you find out!
Melanie
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moodyblues,
Even though we appear to be NED after treatment, there is no guarantee that some cancer cells didn't break off from the initial tumor and circulate through our bodies, either through the bloodstream or the lymphatic system. They may still be out there, looking to set up shop either in the breast or elsewhere. If our cancer tested positive for ER, (and mine was 95%), we do not want to feed any remaining cancer cells with estrogen. That said, it is highly unlikely that someone like you (who was Stage 1) will face a recurrence or mets. Your cancer was Grade 3, so there's that.
My stats are worse than yours are, so I'll do the AI. I'm good.
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Hap, I understand what you are saying. I feel like I'm an intelligent woman yet, the information contradicts being cancer free. I understand the part the lymphatic system plays in all of this so, maybe that is why they feel estrogen blockers are necessary...in case there at rogue cells lingering, I don't know. I am doing what they feel is necessary- for now, I am 55 now and looking forward to 85 and beyond!
Melanie
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Hapb, this is odd...the link works for me. Anyone else?
I think you ladies would like this blog piece...title is "Don't Ask Me To 'Get Over' My Breast Cancer History". It is on Huffington Post and written by Dr. Yunus.
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Hi everyone,
I agree that the cancer is supposed to be gone. I sure hope so. I am stuck doing AI again and while I didn't have any physical side effects, I was nutty. I didn't know it then, but I know it now. I fought with people over the stupidest stuff. Lost some due to it. I don't want to go nutty again.
Posey, thanks for sharing that article. I do like to read articles that say what I am going through, like it's not just us who have all these feelings.
Hap and Melanie, I am 55 and have aged over these past few months for sure. I also have great intentions to exercise but don't. I really need to get it together. Been having a pity party and need to regroup. I would love to make 85 and celebrate Hap turning 88.
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hi ladies
It’s been a long time since I was here. Hope everyone is well.
I have a friend who is also Triple positive her2.
First chemo and she has mouth sores. Anyone who dealt with this and what did you use. She tried biotene.
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KimCee. I feel so much better since my chemo ended and I am doing exceptional on just the Herceptin. I am working at lowering my sugar intake, drinking more water and walking more. I was robbed of 2017 and am believing 2018 will be really good. I do find the estrogen blocker makes me feel a bit overwhelmed and weepy at times, I do my best to push those feelings away. My gray hair is telling my age, I hope that it's a shimmery, shiny gray!
Posey and HapB, the link worked for me.
Melanie
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Thanks so much Melanie, good to know that there is light at the end of the tunnel. My last Taxol is two days away. I am glad to hear Herceptin may be fine. That's exactly how I feel, robbed. I hope your hair is shimmery shiny too 😁 How long did it take after your last chemo to start coming in? I totally forget from 18 years ago.
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Rinse with warm salt water several times a day. Also sugar free jolly rancher candy kept my mouth more moist than biotene.
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KimCee ... I understand about the fighting sutff. DH tells me I "swing after the bell" ... well he use to say that. Since I started the Ritalin, I really am more focused and less "nutty." My Psy said I would only take this about 6 months but I am going to ask him about taking it a little longer. And, yes, regroup girlfriend!
I think, Melanie, "rob" is the best word.The Nurse Practitioner on my MO Team said she thought Triple Positive was the hardest treatment because it is a full year. I think the every 21 day schedule keeps the treatment foremost in our minds for that year. It seemed like everything else was scheduled around treatment day.
About hair ... mine is now DARK...almost black. It is mostly black with silver. I am beginning to like it.
About aging ... I look so old to me now. DH doesn't see it. He's kind.
Vicky
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Hi ladies, welcome all new members, I have been following all the posts.
I had my last chemo on Monday and they nurse removed my piccline, finely, it was itching a lot lately. This last EC is hitting me hard, I am nauseaus, drained and lost my taste gir anything else but salt, a little sweet taste is coming back it seems though.
SpecialK, I am starting with my wbc shots on Friday and I got Clarityn 10 mg for the bone pain, when do I start? Today or tomorrow? I actually discussed it with my oncologist and she did not heard of Clarityn making any difference in this case but I told her what you posted before about Clarityn stopping the edema in the none marrow and she said that I can try it if it helps. So should I start taking it in advance or the same day I will take the first shot Cherry
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KimCee, my hair started coming in right after my chemo ended and I feel like it's thicker now than before I was dx'd with cancer. It's not long but, long enough to cover the top of my ears!!! The other day I was wondering whether to trim around my ears but, I haven't because I hate to cut my newly grown hair. I am glad that you are almost through with your Taxol!
Vicky, there is ALOT of gray and a great deal of dark under it. I will take a picture soon and post it if I can figure out how to do it.
Everyone: Genetic testing came back, I do not carry the BRCA gene! I have not passed that to my beautiful daughters, thank goodness!
I will have my mammogram the end of February on my remaining breast and I have an echo next week. My NP told me that she will set up my CT's and bone scan soon.....I feel a bit of anxiety about that. It is what it is, it has to be done I'm sure....? I wonder how good all those scans are for our bodies, oh and let's not forget about the dye.
Melanie
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moodyblues,
You look awesome! My hair grew back in curly, but it's back to its straight, stringy ways now. I don't care; once you haven't had hair, you come to appreciate having ANY hair on your head!
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Pre Chemo
Picture in blue shirt taken at the end of 2016. Here's to 2018 and new hair growth!
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Hap, thanks for the compliment. My hair is dark under with a heavy coating of grey on top, I have a skunk streak at the very top of my head that I should have posted.....I may still do that....it'll make you smile. I am sorry that you are having such a go with the treatments, I am positive that your anxiety makes you feel worse too. Worrying and stress isn't good for any of us and I know that you are terrified that there will be permanent damage. I hate that this isn't a good day for you, probably tomorrow will be better. ((hugs))
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Thanks Hap!
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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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