TRIPLE POSITIVE GROUP

Photogirl81

dear Ladies,

It's been quite a while since I have posted anything. To be honest, the issues this thread was facing sort of felt like it was time to let go a bit. Also, I needed to "get away from this bc". I did come back a few times to catch up on how you all are doing, and was shocked to see how many newbies are here.

In April I got my last Herceptin. Yaay. It was a great day, but also, a bit scary. Even though the hormone treatment will be going on for a long time (Lucrin which is the equivalent of Lupron, Tamoxifen) I considered the last Herceptin shot as the end of active treatment. And I struggled a bit with that feeling: I sort of feel like I was left alone with my bc.

June 20th will be the one year anniversary of finishing my last chemo. My hair finally reached a length that I can be okay with (sort of). Funny how wavy it became, and that makes it look and feel shorter than it actually is. I have always dreamt of wavy hair, now I have it. All I miss now is the length, but I am sure by the time it grows longer, the new-found waves will disappear... 😁

All in all I am doing great, except that my feet still hurt, but ehh, that is a small price to pay for getting a second chance.

Just one thing that came to my mind, but sorry, forgot the name who starts chemo on the 18th: I had my eyebrows tattoed just before my first chemi with this new natural looking technique. It was one of the best decisions I made! It helped me look natural and normal in my wig, to a point that almost nobody noticed what was really going on. I kept my bc a secret, only very few knew, and the eyebrows helped a lot in this! Plus I loved them so much, I'm planning on doing them again!

Hugs and love to all of you!

Photogirl

deni1661

Welcome to all the newbies. This group has been my source of strength for the past two years. It doesn't seem like it in the beginning, but in time life will become great again and possibly even better than before. I found talking to other cancer warriors to be my greatest motivator in staying positive throughout my treatments and surgeries. We are in this journey together and always here to help in any way we can! I keep all my triple positives in my daily prayers that we achieve complete healing. Best wishes to all of you as you begin your journey.

Photogirl - congrats on your last Herceptin! I remember feeling lost without my treatment routine when I finished too. I became so attached to my MO, PS and the entire medical team that it felt like I was losing my family. Keeping active in this group provided me with the support I needed to transition into post treatment life.

TriplePH - sending extra prayers and hugs your way for a good meeting with your MO on Tuesday.

Juli24

Photogirl, I have contemplated getting the eyebrows tattooed for awhile. My left one never came back in!! I know, sounds strange but true. It really doesn’t bother me but kind of a pain drawing it on and trying to get them to match. I was never a makeup person before this journey so am a bit proud of what I’ve learned.

Kind of a funny story that I now have to tell. All my life my hair has been fine and straight as a board. I couldn’t wait for it to grow out to see if I finally had curls! It came in partially grey (I’m a grandma so that wasn’t unexpected) and curly.....on ONE side of my head!!! I kid you not! My hairdresser told me not to worry because chemo grow out usually returns to your pre-chemo hair within a year. OK, I could handle that & it was a great conversation starter! I tired of the grey within months & colored it. It has now been years & my hairdresser didn’t stress the “usually” enough or I would have clicked that I am anything but usual. You guessed it - my hair is STILL curly on just one side!!! I keep it pretty short because it is easier. I know it’s time to get it cut when the curls stand straight out from my head...haha! Do I mind? Not a bit. What was once important to me doesn’t seem as important anymore. No grey is another issue!!

Welcome to all newbies! I pray for every one of us! Have a good week. Hugs, Jul

Tresjoli2

photogirl...I stopped the lupron, and my foot pain and joint pain and feeling like I was 100 years old vanished. I had attributed those side effects to tamoxifen. My GP suggested it was the lupron and she was right. I feel a zillion times better.off the lupron. Food for thought, it's my experience only...no hard data to back me up...

Suburbs

Photogirl81, thanks for checking in. Finishing Herceptin after a year is something many of us experience. I had a similar reaction at the end. I was filled with fear and anxiety, worried that I would not have that same level of monitoring from my care team. I think that fear drove me to continue with nerlynx in order to continue to be closely monitored. And like you, I miss my hair. It's about 2 inches long and a very very curly mess. Your attitude is much better than mine. I need to take a page from your book and remind myself that it is a small price to pay for a second chance.

SusanHG123, good luck with your move and new chapter in your life.

SpecialK

One thing that is helpful is to stagger appointments among your providers so you are being seen by someone incrementally. I saw BS, PS, MO and primary and tried to arrange those appointments so I saw someone every few months. My MO sees high risk patients every three months for the first two years, then every six months for several years, then the move to once a year is usually at the five year point. He does labs, including tumor markers, at every appointment. I just got to annual appointments with him at the 7.5 year point because I had some imaging that was suspicious at five years, so he dropped me back to every six months for about 18 months. I no longer see my BS annually unless there is a problem (I saw him at the five year point so he could weigh in on the abnormal PET scan), and I see my PS annually now. I didn't have rads, but I know a number of RO see their patients for some period of time after rads is finished.

susanHG - good to see you - sorry I can't help with anything in CO, but I'm jealous that you are going there!

photo - yay for last H!

Jstarling

Just checking in to say hi, had #4 TCH last week. Still tired and looking for something that tastes good (or even palatable) but the end of chemois almost in sight. I have another MUGA? scan scheduled for next week and will consult with the Radiation team soon. Mostly, it is really hard to stay upbeat, but I know I am blessed with supportive friends and family. A day doesn’t go by without a call or card. I truly hope that in time I will gratefully be able to pay all this kindness forward...I went out and pulled some weeds and dug in the garden this morning, that’s about all the action for me today!

hapa

Wow, I'm amazed at how much follow up is involved. I was hoping I'd walk out of my last Herceptin infusion and never have to think about those people again! I had a feeling that wasn't realistic.

BJI

I finished my last Herceptin May 24th. I will see my MO every 3 months for the next year, one more echo in 3 months, no blood work, yearly mammo. I saw my RO 3 months after finishing radiation, he said call if I needed anything, but he didn't need to see me again. I am keeping my port for time being, so will have a flush scheduled every 4-6 weeks. Am so looking forward to an appointment free summer!

BJI

I finished my last Herceptin May 24th. I will see my MO every 3 months for the next year, one more echo in 3 months, no blood work, yearly mammo. I saw my RO 3 months after finishing radiation, he said call if I needed anything, but he didn't need to see me again. I am keeping my port for time being, so will have a flush scheduled every 4-6 weeks. Am so looking forward to an appointment free summer!

SpecialK

hapa - follow up is different for all of us, I happen to have a MO who follows this schedule, and I saw BS/PS a lot due to recon issues. Not all docs maintain this level of vigilance and not all do continuing labs. I did also keep my port - initially because my MO asked me to, and yes, it was because the recurrence risk is greatest in the first few years, and yes, he verbalized that. I went every 6 weeks for a flush, but I didn't mind doing that because it kept me on the nurse's radar - if I called and needed anything they knew me and it was helpful. Then I encountered additional surgical complications with recon and removing the port was on the back burner. It was due to come out in 2016 and then I had an abnormal PET so my MO wanted it left in - my PS literally texted him from the pre-op to ask him. I have zero emotional response when I walk into the infusion room, partly because the people there are so awesome, they are the same ones from 2011-2012 when I was receiving infusions - and I have accompanied two friends for their chemo since mine - it doesn't bother me, but I realize that is probably not normal, lol! I also frequently had to get my Prolia shots there until my center enlarged and now has a dedicated injection room with a full-time nurse.

moodyblues

Okay ladies, I am OVER it with the Letrozole, the emotional toll is crazy.  I handled menopause fairly well and am so surprised at the emotional rollercoaster that I am on.  I was on HRT before the BC (lowest dose of combi patch 0.05 - 0.14)  because of some of the same feelings.  Anger, depression, tears, short fuse- a pot continually threatening to boil over...that I am.  The first two months of Letrozole I was fine and now 4 months later I am ready to blow.  Any advice?  I am anxious all of the time. 

Any tips?  

I do know that my manufacturer has changed a while back, could this possibly be the cause or is it truly just the lack of estrogen in my body?  I am cross posting to my Femara group as well to try and get as much input as possible.

The vaginal dryness is a small bit better because I use Replens every other night (terribly messy, but it is working).  I have not as of yet tried the Luvena as I wanted to compare a month of Replens to a month of Luvena.  I will then (with my ONCO's approval) try the Intrarosa for a month to see which is the magic bullet.

On the bright side my last Herceptin is in 2 days!  I may kill someone before then .....lol.  just kidding.  Please send cigarettes to the prison.... even though I don't smoke....I may just start.  

SpecialK

moody - yes, the manufacturer can make a difference. Do you know if you can go back to whatever the one was that you had before? If you have issues that are severe enough your MO can also write the prescription for the name brand, and most insurance companies will cooperate with the higher price, if they have a request from the doc that indicates intolerance of generics. Yay for the last Herceptin! You need to party with photo and BJI! I promise to send cigarettes if there is a prosecutable incident in the meantime, lol!

ElaineTherese

moody,

I have always reacted to hormonal changes with depression and moodiness. I had bad PMS, starting 10 days before my period. I was a wreck during the first trimester of my pregnancies. So, I was totally not surprised by the depression and moodiness on Aromasin. I told MO, and she suggested Celexa. I've been on Celexa ever since and feel good.

Since Memorial Day, I have also been swimming every day with one of my sons. Swimming is very relaxing for me. Good luck!

moodyblues

Thank you Specialk for the info.  I didn't think that the change in manufacturer would cause the crazy feelings and emotions that I have been dealing with.  I knew that it could change the other SE's etc, just not that.  I will check to see if I can find who the old manufacturer is and see if I can get that.

BTW, I prefer Marlboro.  Red. Hard box.  Yep.... 

moodyblues

Thank you Elaine.  This is just a bad spot to be in, I hate how I feel.  I am the glass half full gal!  I WILL get a handle on this. 

Ingerp

Heck--I'll go ahead and bake a file in a cake. ;-)

moodyblues

Hahaha Ingerp!

Jstarling

Moody, Hang on during your wild ride! We have your back

Photogirl81

Tresjoli2, I am afraid to stop lupron. I was 80% ER+, and unfortunately not a thin type. Plus, not even AC chemo stopped my period, my doctor thought it was partly because of my young age and that I am a very strong woman... lol

I am waiting for the results of my BRCA testing (kinda anxious about that) and if I tested positive, I will need to have my ovaries removed. So then I can stop the Lupron. But honestly, I am so afraid of testing positive that I rather live with the pain and get the Lupron shots.

One thing I miss is that my oncologist never took the time to sit down and explain things to me. I have read so much, and learnt a lot, but honestly, I wish he had given me some explanations and guidelines for the future. But so lucky I have found this TP thread, you all ease my anxieties. You and my two furry kitten-babies.

Love,

Photogirl

Photogirl81

Suburbs,

I do have to remind myself of that from time to time. I miss my hair. I've never been a too pretty or too beautiful girl, so losing my hair was like losing the last drop of confidence. I did not even look in the mirror when I was bald for the first few weeks. I put my wig on and after that I looked in the mirror.

But now whenever I am overwhelmed with a hot flash, or look in the mirror at my funny hair, or look at how much weight I gained since chemo... I remind myself that I am so lucky to be alive, and that nothing matters more than the fact that I can still be here with my family and kittens, and with the love of my life, my husband. But again... I miss my painless feet, my hair and my days without a hot flash! :

Mommato3

The only person I see now is my MO. My schedule was every three months for the first two years, four months until year three and then six months until year five. Not sure what will happen after year five. I'm guessing it may still be every six months as long as I'm on an AI.

Moody, I started having anxiety with Arimidex at almost a year. It was weird that it started so late. Within a few months it had resolved itself. On generics: I had terrible pain in my left wrist due to tendinitis. Switched manufacturers and it was gone within two months. Doesn't hurt to try a different one. My MO wrote a specific manufacturer on my prescription so I only received that one.

moodyblues

Mommato, I called around today to find a pharmacy who carried the Letrozole made by the previous manufacturer Apotex and have been unable to. Walgreens, Bi-Lo nor Krogers. I may try the Femara if I cant find it. I'm just mad as fire at the smallest things all the time. Ahhh I'm sure it'll turn around one way or the other.

moodyblues

Thank you Jstarling, I'm hanging on for dear life!

TriplePHtown

deni1661 - Thanks for the prayers for my appointment tomorrow.

Thanks to everybody for the info on the timing and types of follow up appointments you have. It's interesting to hear how things are done all around the country and beyond

Taco1946

Funny how we react differently to the AI's. I am fine with Accord's letrozole. Even the mood swings I was having with arimedix are better. BUT I do think BC is enough of stresser that it is understandable that some of us need a little medical/psychological help managing this journey.

If you are reading this at the start of your journey, I second the tattooed (or micro bladed) eyebrows. I missed mine more than my hair and I have always been a make-up klutz. I also had gel nails done and didn't lose a one. Two toenails though.

Suburbs

Jstarling, if you can do a bit of gardening after 4 rounds of TCH, I would say bravo. That is a big accomplishment. It's a tough regime. Sounds like you are handling it pretty well.

Moodyblues, I hear you. I'm still taking a low dose of Prozac. It's definitely helping but I have moments like you describe. Hang in there. Please vent often and keep us posted. We don't want to have to bail you out!

I don't want to get ahead of myself, but, after a year dealing with a post-surgical infection and revision surgery post surgical return of infection, I have finally turned a corner. The wound has closed. No more output. The bandage is for safety, not a weeping wound. I see my infectious disease doctor tomorrow. Fingers crossed

coachvicky

MoodyBlues ... Go to the manufacture's website and ask them where to get it localy or if they can directly sell it to you. No jail time, sweetie ... Orange is not your color.

Photogirl ... It will get better. I think it takes a good year from the last treatment to feel like yourself again. As for not understanding, several months after I had my diagnosis I asked my first Oncologist to go over everything again and explain it to me. It was the kindest he had ever been. He said you were in shock when your first heard this and his second explanation made sense to me. Just ask.

I am off to PT this morning for my hands. I believe this will avoid trigger finger surgery from most likely the Arimidex.

Warm wishes to all!

Vicky

KasiaK

Welcome ladies,

just to let you know I had my last herceptin yesterday and first zoledronic acid (I`m supposed to get it every 6 months) and today I have terrible back pain . I hope it will be gone soon as I`m getting back to work on Thursday.

I thought my onc would switch me from tamoxifen to some AI - but she hasn`t. She said tamox is better in my case, that she would give me an AI if I was very young (I`m 40) , or my tumor was big (it was 1,5 cm), or if I had node involvement. Can you (SpecialK? ) comment on it? I started to read TEXT trial but my English is not good enough to understand it in every detail. I don`t know if patients engaged in it were high risk given their age, tumor size or node involvement? Does it make a difference for me , shall I insist on switching to AI or tamoxifen is enough? My onc also said that 5 years of hormonotherapy would be enough for me. Well, I was convinced I should get 10 years. Grrrr ….

moodyblues

Suburbs, I know that if all of you ladies pool your money, you can get me out!! Or buy me cigs. lol.