TRIPLE POSITIVE GROUP
Comments
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HapB - have had some hot flashes, minor ones, not sleeping too well at night. Have some knee and joint pains, stiff joints, but not sure if from herceptin or arimidex. They are always a little worse the week after my herceptin, better the 2nd week, and much better the 3rd week, and then start all over. I have been on it for a month, so far I'd say manageable. I discovered that the calcium 1200mg/ vit d3 1000mg that I have been taking since late August, I was supposed to take twice a day to get that dose. So I have been taking only 1, so getting half what I thought! I might have to take a look at the previous dexa reports and see what numbers were 2 yrs ago. They were done at a different facility.
ElaineTherese - Is Fosamax what they recommended? Doing some research on Prolia, wonder if better to get injection twice a year or weekly pill?
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BJI
About Prolia... I have had two shots so far. I have had no side effects. My first dexa showed osteopenia. I did not want to take a pill. So, I did 5000 units D3 and 1200 mg calcium daily. I also eat Greek yogurt daily. Two years later dexa showed osteoporosis. Ugh... I chose prolia. My biggest concern is my teeth. Worried about issues due to these bone building drugs. So far, so good, knock wood
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Hapb, no offiresults from my clinical trial yet. The only info I have is from my MO. I asked him for updates whenever I had a treatment. I became friends with another patient in study and she is making steady progress with her tumor about 75% eradicated so far (she is a little over half done).
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BJI, sorry to hear about your recent osteopenia. Cancer is definitely not a "one and done" disease - it sucks! I certainly appreciate when I have a good day and all that means is the pain isn't so bad, my hair looks half way decent and I have just enough energy to get through my work day. Unfortunately today is not one of those days - my face is covered with tiny zits.....not a major big deal but I'm already self conscious of my hair, lopsided boobs, and the way I walk because of pain. Sorry went off on a rant there
You have a good attitude and that helps. Have fun this weekend
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KimCee what are your concerns about your teeth? The reason I ask is because my dentist said she was worried about a wisdom tooth I have that most likely will need to be pulled. She wanted to talk to my MO before doing any major work on my teeth.
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Deni1661, I am not laughing at you but with you. Your definition of a good day lines up pretty well with mine. It's a world apart from before BC.
On the subject of meds that protect your bones, if you have a condition where you have excessive bone growth in your mouth, a bisphosphonate can exacerbate the condition. There is another dental side effect of bisphosphonates whereby bones in the mouth can be weakened and result in osteonecrosis. I can't post the link properly but a search for bisphosphonates and dental side effects should provide enough information to make you crawl under the covers if you are having a bad day.
Personally, I am so sick of side effects. I felt great until I was cured and now I feel like a wet dish rag most of the time. A day at the office wears me out completely. I have to nap when I get home. The constant appointments, the infusions, the prescriptions, the post-surgery scar tissue and infections. What next! Every time I think I see the light at the end of the tunnel, I have a set back. That is my rant for the day. Thank you very much for listening
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Hi Deni
Suburbs explained the dental issues a few posts up. I do not have any dental problems and hope not to have any. I invested in Invisalign and am still in treatment for that - ugh. So I don't want my new straight teeth to have issues due to my bones and Prolia.
HapB, I told my oncologist what I was doing regarding the vitamin D and calcium He gave me two more years to try that before telling me I need to reconsider the Prolia because I certainly would not want to suffer a compression fracture or broken bone. I heard that and bit the bullet after two years of taking the Vitamin D and Calcium, which did not help at all. My last dexa after 8 months of Prolia put me back at Osteopenia. In two years I hope to be back to normal. Hmmmm, well normal for a BC survivor...
What we take to stop our cancer gives us a slew of other issues. Been dealing with it all since I'm 36 - quite annoying
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Kimcee, I am on the maintenance phase of Invisalign having finished up my last progressive tray just a few weeks before my bc dx. Now I'm wearing the tray that is supposed to permanently stabilze my teeth in their new spots. I think I've seen some minor shifting since starting chemo and really need to get in to see the orthodontist to see how we can prevent regression as I like my new smile a lot.
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I started Prolia in Feb 2012. I was diagnosed with osteopenia years before my breast cancer diagnosis due to an early hysterectomy. I could not take oral drugs due to an earlier surgery for reflux. I remained stable without meds until chemo and six months of letrozole. After my fourth Prolia my Dexa showed recovery to normal density. I have had no issues with Prolia so I started Invisalign several months ago, and I am half way through. My dentist's wife is a stage III ovarian cancer survivor, and he stays up on treatment induced dental issues. My only Invisalign related problem so far is slower movement of my teeth so instead of changing trays every two weeks, we are doing three. My dentist says this is pretty consistent with post-menopausal women on Prolia doing Invisalign because of the stregthened bone. So far, so good.
Hap - Herceptin alone doesn't usually cause hair loss, but it can slow hair growth and recovery. I did not experience this, but I know others have. My hair started coming back pretty slowly and I wore my wig for 5 months after my last chem, but once it started it grew at the normal rate - at least 1/2" a month.
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Hapb I'm not sure if my hair loss/breakage is Herceptin but it was pretty significant when I was on Arimidix. My hair got thicker since I'm on Letrazole but now it is so dry it looks like a birds nest on my head!
KimCee so sorry you have been dealing with this at such a young age. You have a positive attitude despite all you have been through.
Thanks Suburbs, KimCee and specialk for the info on dental issues. Geez it's always something!
I really hate to whine about all these side effects but it's comforting to know I'm not alone in this battle. I pray that with time things get better for all of us!0 -
Wow, you learn something new everyday. Over the past 18 years I could never figure out why my hair got worse and worse. I thought I was the only one whose hair was thinner after chemo. I recently thought it was the taxotere - but, the hysterectomy and AIs could have definitely been the problem. It has been fine and thin, but the past two years, it has been like the birds nest look. Frizzy no matter what I do.
I may be a nurse, but I do not know everything - my biggest wonder right now is how the heck did this new breast cancer turn out 100% estrogen positive - after all I did to get rid of the estrogen?
And yes, I hope somehow, someway, someone can come up with a treatment that works without all the other issues. xoxo my Breast Buddies
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I have a question: anyone who did genetic testing? I have discussed it with my oncologist, it seems that I do not have enough reasons to do the testing but I want her to push it for it anyway and she said she will give it a try but also told me that Her2 positive bc is rarely genetic. I wanted to test myself because I have to daughters and one of them is in her twenties so she is concerned and wants to test herself but first I must be tested. I recall that I heard either somebody mentioning that or reading it somewhere but I am sure.
About the feeling of it is never ending ordeal, I feel the same. Tomorrow will be four months since the doctor during the US told me looking at the screen, I am sorry but it does look a malign tumor and my life has changed. The BS I met right afterwards just said this is a tiny bc, so far we have plans for surgery and radiation. Look at where I am four months after, unrecognizable, frightened to the point I could not handle the anxiety without meds, scared of everything, not knowing how cope with the reality, considering more chemo. I am constantly on the brink of start ranting looking at people and thinking they all are fine and I am living under constant stress scared about my life. Also accidentally found out some bad news today about a blog I red this summer and wanted to tell it here and decided not to but I am so tired of living like this, sometimes it is just too much.
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HapB, really, here you have to convince the doctors to carry out genetic testing. It was new to me that Her2 positive tumors are not hereditary
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Hi Cherry-sw. I had the testing in order to determine if I also would have my ovaries removed. Since I was also triple positive too, I would think the same reason would be relevant for you. Hope this helps.
As far as the misery factor goes, you are in your fourth month of the triple positive adventure. I was warned that it would be a year and it would not be fun. Once you are a few weeks past chemo you will start to feel a little better every day. And feeling better will feel very different than it did before breast cancer because it will feel so much better. Right now you are in the thick of it - worst treatment cumulative side effects - and maybe it's hard to remember what life was like BC. It will get better.
I have been dealing with a rotten setback - post surgery abscess that did not respond to antibiotics. I spent 5 days in the hospital and left two weeks ago with a big drain (imagine worse than the JPs!). Today I went back in and everything was resolved and I lost my extra appendage. Hurrah. I feel like I am walking on the moon.
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Suburbs, yay that it has resolved itself with the abscess, hope it will heal soon.
Thank you for the reassuring, I really hope it will get better but I am sitting there all the time thinking about what if it wouldn't or if it would and then it will be over. I read online even though I promised myself to stop reading the blogs and I am terrified when it goes downhill for some women. I also feel that I lost my ground and all my interests, everything feels meaningless. I used to live a simple uncomplicated life, went to work, came home, cooked dinner, did what made me feel better which were running, cooking while drinking some wine, planning vacations, doing groceries, home chores, things with the kids. It is all gone now, for different reasons I cannot do anything, or have no pleasure in doing things, not even with the kids. Is it ever coming back, I do not know how to live after treatment. I realize now what my major problem with pink October is that they will never understand how we feel no matter how hard they try, and that I want to be one of them so badly and yet I am not and there is no way back.
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Cherry,
How old are you? I was diagnosed last year at 41. My cancer center recommends genetic testing for anyone diagnosed under 45. They worked it out with the insurance and I didn't have a copay on the test. I don't know the exact rules here is in the US. My test came back negative.
DizzyGirl
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DizzyGirl, I am 45 and I am not in US, here they test if there are enough reasons as they say, i.e. there is a family history. I do not have any and my family is small, so I am a history now and have two girls, I want this testing to be carried out. I like my current oncologist and have faith in her, i hope she can push for it.
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KB870, I really hope it does, it simply has to and I need to find myself some new interests otherwise I feel completely lost.
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I believe that it is true that Her2+ driven aspect of our breast cancers is not hereditary, it is considered a somatic mutation. Somatic mutations are not passed on to children like germ line mutations, which are inherited. However, the other aspects of our cancers - the hormonal component could still be caused by genetic mutations, as BRCA mutations are mutations of tumor suppressors. I was 54 at diagnosis and was tested. I am adopted and have zero access to family history. My oncological breast surgeon was not comfortable recommending any particular type of surgery until he knew my status. He originally thought I might be a lumpectomy candidate but would have recommended bi-lateral mastectomy if I had come back BRCA positive. Hap, I am guessing one of the reasons you were tested is because this is not your first cancer, and there are some mutations that cause other cancers in addition to breast. BRCA is the most commonly looked at mutation and only occurs in a small percentage of the breast cancer patient population - approx. 5-10%. There are some other mutations that are thought to be linked to breast cancer, and this field is developing.
cherry - I think it is important to recognize that it is impossible to feel normal while in the middle of treatment - to expect to do so is unrealistic. Time is your friend - the further you get from treatment the more you may be able to resume the things that brought you pleasure. In my experience there has been a shift - I am not exactly the same person I was - but I can be happy and engaged in life again. While I am a long way from chemo and Herceptin, I just had my last reconstruction surgery a year ago and still take anti-hormonals, so I have not completely left the treatment experience behind, but breast cancer no longer rules my world. The adjustment to being a person who had breast cancer is a process and it takes time and attention to get to the other side, but you can do it.
suburbs - glad you lost your drain, and are making progress. I feel ya.
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Hey!
Guess what today was?
BLNRD... Bi lateral nipples reconstruction day.
I have nipples!!! Have not been able to say that since 12 July 2016. Next step is 3D tattooing.
Special K is right about time, Cherry. The day will come when this does not rule your life.
Suburbs, no drains with this! Glad yoursare gone.
Vicky
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coach - yay - nips!
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Thanks Hap and Special K.
I am really feeling the end.
I did this for me. I wanted nipples. I am unsure why I wanted them and waited a long time to decide. That probably does not matter. I just trusted my gut and did it.
Vicky
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Thanks everyone for your kind words. In terms of what can bring one joy when still completing the treatment and reconstruction plan, losing a drain is like winning the lottery. Hurrah!
I still remember that piece of paper with my treatment plan scribbled on it. It looked like a pretty straight forward flow chart. This, then that, if that then this, etc. I look back now more than halfway through and realize it was a good thing that they don't tell you everything all at once.
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Cherry - I was 62 this spring when I was diagnosed. I had no genetic testing, MO said HER2 is not genetic. My concern was for my 33 yr old daughter. She did go see her primary, who did order a 3D mammo as b aseline study. They also suggested baseline MRI too.
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Thank you KB870.
When all is finished I will share pictures on PM ... and no face. LOL.
Vicky
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Suburbs - congrats on the drain removal...I know how awful those stinken things are!
Coach - Congrats!!! yay you!!! The things we get excited about, lol.
I start the Taxol & Herceptin next week. My cancer center does Dignicaps but not the mittens and socks (ice). My oncologist said I can ice my hands and feet. If any of you did that on your own - what did you use? I'm thinking frozen corn or peas? Any insight would be awesome. Thanks.
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Suburbs- sorry you had to go through that abscess mess, glad your drain is out! Please no more setbacks, only forward to complete healing!
Coachvicky- congrats on the nips! Exciting indeed, good for you on your decision 😊
Specialk - thanks for the great info on genetics. I was very worried about my daughter and granddaughter when I was first diagnosed but was tested and no BRCA. my daughter is 39 so she's getting her first mammo soon. Even though HER2 is not hereditary I will always have that fear. I have no cancer in my family so I naively thought I was immune but now I know cancer can get anyone any time.
Cherry, I feel so bad for what you're going through. Time will definitely help. Things aren't perfect for me but I am in a much better place mentally than I was a year ago when I was a few months into treatment. Sending hugs0 -
Cherry - I share your pains, because I also lost my interests in my hobbies and feel very empty in life. But I’m hoping once I finished my taxol chemo treatment and move on to radiation maybe some of the SEs go away and I get some energy back.
Coach - congrats!
Suburbs - such a strong woman!!
From, lurker
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kim - I iced and used large bags of frozen peas. I brought them in an insulated cooler, along with a big Tervis tumbler of ice chips for my mouth. Make sure you get large enough bags to cover your toes, it is easy to not get the pinky toe cold enough. I did not ice for anti-neuropathy, I iced for anti - onycholysis, Mee's lines, darkening. My chemo started with Taxotere first after pre-meds, so I started icing when the nurse hung the last bag of pre-meds, iced until 10 mins after the T was done - about an hour total. I laid the frozen peas across the top of my feet and put two bags on a towel or sweatshirt on my lap, and dug my fingers in like claws. I painted my nails with dark opaque polish for infusion day, removed it with non-acetone remover next day and painted a clear coat of nail hardener. Repeated daily with one clear coat for 7 day, removed it and started again. If you do weekly Taxol you would just repeat the clear coats for the one week, then do the dark for your next infusion
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Hi Everyone,
I finally had my chemo education class and start on Taxol and Herceptin on 10/26. The nurse who did my education said that nail issues are much less likely with Taxol than with Taxotere. She said in her 7 years working with chemo patients, only one patient had serious nail problems with Taxol. Would I be overreacting by freezing my fingers and toes? She also said that Taxol is not light-sensitive. They don't cover the bag. If that's the case, why do I need the dark polish? I was fully prepared to do all of these precautions, but she made me feel that it was very unlikely I'd have an issue.
I've already had my lumpectomy, brachytherapy, and my chemo port was put in a week ago. It still hurts.
I'm getting extremely anxious about the chemo. The nurse also told me that the side effects kick in 1-2 days after treatment. I didn't realize that.Thanks for your input!
Danna
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