TRIPLE POSITIVE GROUP

Cherry-sw

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

Suburbs

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.

Cherry-sw

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.

DizzyGirl

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

Cherry-sw

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.

Cherry-sw

KB870, I really hope it does, it simply has to and I need to find myself some new interests otherwise I feel completely lost.

SpecialK

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.

coachvicky

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

SpecialK

coach - yay - nips!

coachvicky

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

Suburbs

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.

BJI

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.

coachvicky

Thank you KB870.

When all is finished I will share pictures on PM ... and no face. LOL.

Vicky

KimCee

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.

deni1661

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 hugs

PauletteK

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

SpecialK

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

Dannajae

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

SpecialK

dannajae - you are right that nail issues occur less with Taxol, I had 6 infusions of Taxotere, so I iced. You can roll the dice, but I approached it with the thought that it was easy to ice and possibly prevent a problem, than to deal with it afterward if I was one of those who experienced issues. I had 9 perfect fingernails after chemo, no lines/grooves/darkening, but did have one lift - my wedding ring fingernail. It finally had to be cut off completely by the dermatologist long after chemo was over, while I was still on Herceptin. It took six months to grow back so that it covered my whole nail bed. I also lost my pinky toenail, but it grew back much more quickly. This is why I warned to use a bag of peas large enough to get good freezing on the baby toes. The light sensitivity is to your nail bed, not to the drug. See the following:

"Authors have suggested that chemotherapeutic agents increase sensitivity of the nail apparatus to ultraviolet light. Hussain and colleagues found that onycholysis secondary to paclitaxel treatment for breast carcinoma increases by exposure of the hyponychium to sunlight.¹⁶ The researchers additionally found that protecting the nails from sunlight prevented nail loss in a large percentage of patients despite continued chemotherapy treatment. The hypothesis is that the hyponychium may be more sensitive to UV light following chemotherapy treatment and that UV light may induce nail changes by rupturing the bond between the nail plate and the hyponychium directly or by inhibiting cellular maturation in this area.¹⁶ In addition to increased sensitivity to UV light, the toxic effects of chemotherapeutic drugs can make nail plates thin, brittle and more prone to mechanical trauma."

Here is some info from Memorial Sloan Kettering regarding nails and chemo:

https://www.mskcc.org/cancer-care/patient-education/nail-changes-during-treatment-taxanes

Dannajae

SpecialK -- Thank you. Ironically, I just finished reading the article you shared as I looked it up while I was waiting for responses. I've been planning on icing, but with two hours of treatments, I would really like the use of my hands. Not 100% sure what I'm going to do yet. I appreciate your experience.

Kind regards,

Danna

SpecialK

dannajae - just to clarify, I only iced during the taxane, not Herceptin. They may run your initial Taxol longer to make sure you don't have a reaction, but after that it may go faster.

PauletteK

Danna, some of us have reaction on taxol such as me, so my taxol last about three hours long. That make it hard for icing. I only could ice for two hours long, I have ice socks with couple pack ices,

Dannajae

Do ice gloves and ice socks work? Where do you get them? Surprisingly hard to find, even on Amazon.

T-Sue

Vicky and Suburbs, Congrats on progress: ditching drains and new nipples! Better than chocolate!

Kim and Danna,  Good luck gearing up for the start of chemo. The anticipation was intense for me and I felt better once we got going. Come back to these boards for support, we are rooting for you!

Cherry, this is such a tough time, be gentle on yourself. Your hobby right now is getting good nutrition, hydrating, sleeping, and walking. Find bits of happiness wherever you can: the leaves, your child's laughter. I can tell you that I feel so much stronger and more hopeful every week I move away from final chemo.

Hugs from Colorado!

KimCee

Thanks SpecialK. I will do the peas. Wow, knew none of this when I did taxotere. My nails are really strong and grow long. I get compliments all the time. However, I would prefer lousy nails if I could only have nice hair! Lol

Thanks T-Sue...I start the same day as Danna. Thanks for rooting for us

PauletteK

Danna - I got my ice socks from Amazon, I need to get ready for bed tonight so I can do my infusion, will send you the picture tomorrow after my infusion.

Cherry-sw

coachvicky, that’s a great news! I hope you are satisfied with them

Cherry-sw

SpecialK, I did not think of the hormonal aspect back to my oncologist office but my daughter wondered about the same thing, she said but you have hormonal receptors too. So I will bring it up during our next meeting.

About my mental state, I am low most of the time and can get really scared once in awhile when it all feels unbearable, like all I am doing is in vain and it is just the beginning of the end. I read some blogs online, I will have to stop because some of them do not end good and my anxiety hits the sky. Women in these blogs are so positive and determined and I cannot pep myself into being this optimistic. How can one be optimistic if you read all this and then later bump into an article about them dying a year after.

I so appreciate you al being supportive, I so want to find my new normal because where I am right now it cannot be it, if it is I want another one because my state right now is not a good place to be in.

Cherry-sw

You, guys, are all the best, I do not know what I would have done without you. I just keep on going with the flow trying to make some hard decisions, trying to work, but the life like completely list its taste. Tonight

---

I dreamt about drinking some drinks and reaching for a slim white cigarette, I did not even smoke those before, I smoke sometimes the most light sort and before I wokeup I remember just thinking oh, no, I cannot drink I am in treatment, I promised myself now I did it, so I actually woke up relieved. And I cannot enjoy anything from my family because every time it is like a knife in my heart think if I lose all that. I just cannot stay any positive even though I am on an anti-depressive and have additional anxiety meds to reach for if needed. I am a mess. You all are great.

Cherry

Cherry-sw

For those who had questions about Taxol, I had 9 infusions so far and it went well. I get mittens and socks from the nurse but they told me that weekly Taxol does not affect the nails. I have been sucking on ice until the 8th infusion and I did not get any mouth sores, I am just drinking water during the infusion now. I also was rinsing my mouth with baking soda and salt but then got lazy and did not do it for a couple of days. My taste is not affected, I eat what I want, probably unhealthy sometimes but I attribute my increased appetite to the anti-depressives. I had mild neuropathy in the beginning but not anymore. According to my nurse icing cannot prevent neuropathy, nothing can prevent neuropathy but stopping the infusions, or cutting on doses. This what I have been told. I also learn to stay from any type of cuts because it won't heal. I had a small cut on my finger, not a cut, I pulled a cuticle and got a bleeding sore that got into a lasting ulcer, I had alcohol and desinfections compressions for a week now but it is not getting better and today I will see a nurse about it.