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TRIPLE POSITIVE GROUP

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Comments

  • lg10
    lg10 Member Posts: 37

    I am not an active poster, but I have kept up with this thread everyday and I just want to thank everyone for their contributions. You are all a wealth of knowledge and encouragement. I am 32 and was diagnosed earlier this year (2 months before my wedding). I will be getting my 5th Taxol tomorrow and I have also started Herceptin and Perjeta. I wanted to introduce myself, but I also had to comment on this ongoing "issue." Wildplaces, I appreciate that you are supporting someone who has clearly had some issues with her treatments, but I just don't want this group to be seen in a negative light. They are amazing and have been a huge source of comfort for me. During my first Herceptin infusion, I had a panic attack and I directly relate it to some of the "fear" that this person left on these boards. I hopefully have a LONG life left to live and the drugs that treat our triple positive cancer are a source of hope for me. I am that "newbie" that everyone talks about that is really struggling.

    Thanks again everyone. So nice to meet you.

  • coachvicky
    coachvicky Member Posts: 984

    lg10 ... How can I help with your struggle? What support do you want?

    Moody Blues has posted a couple of times how she mentally viewed her infusions. I got great peace from her.

    It must have been difficult at such a young age and just before your wedding to get your diagnosis. I am sorry you are in this club.

    Warmly, Vicky


  • CCNC
    CCNC Member Posts: 26

    Hi Ig10,

    I am sorry and understand, I almost had a panic attack my first day of radiation, not a good feeling. I don't post a lot either but have been on these boards almost daily since my diagnosis in November of 16. There are two sides to everything and I just remember over the past year there being several times where the responses were disturbingly harsh to her posts. As I mentioned I had a hard time on herceptin but that does not mean everyone will, but I appreciated knowing I was not alone in it. The doctors all acted like it was a cake walk, and it is really hard when you don't feel like your doctors believe what you are telling them. I am really sorry with the timing of your cancer I can't imagine that or being diagnosed at 32. I was diagnosed at 46 and just felt like hope had been taken away. There are a lot of wonderful people on this board and reading their posts over this last year has been beyond valuable. I just don't like seeing anyone ganged up on, it is just disturbing.

    I noticed you are living in Athens. I am a UGA grad and still have family around North Georgia. I don't know where you are getting treated but St. Mary's took great care of my mom when she had to have brain surgery(it's been a few years). Hope your treatment is going smoothly now. Sometimes the fear of the unknown is overwhelming. Hang in there.

  • VVV
    VVV Member Posts: 50

    It looks like Living Beyond Breast Cancer is having a free webinar called: "In the Know: HER2-Positive Breast Cancer" if anyone is interested http://www.lbbc.org/programs-events/know-her2-posi...


  • bheg79
    bheg79 Member Posts: 49

    Hi! I’m 38 years old & have been checking this site out the last few months since I was diagnosed - it’s been a very stressful few months - what makes it even worse is for the last year the docs kept telling me the lump in my breast was nothing/extra tissue and now this. I’m scheduled to start chemo jun. 18 (TCH) - just had full body ct and bone scan this morning - YIKES! I am going to try to save my hair with paxman scalp cooling.

    I’m worried about the side effects of chemo and losing my hair (vain I know). Im hoping my side effects will be not too bad. I’m told my prognosis is good and the chemo is just extra insurance because I’m younger. I just wanted to say thanks to everyone for all the info on this site as it’s been helpful during this messed up time

  • jstarling
    jstarling Member Posts: 137

    Yesterday I had the 4th of 6 TCH infusions, took my Zarxio shot a couple of hours ago and am now on the couch with my knitting and my aching back. So wonderful to know only two more before I move on to radiation. I have another blood pool heart test-MUGA, set up in ten days. I met with MO last week and she is setting me up to speak with the Doctor in the radiation department later this month. Any suggestions or insight what to expect next? I am learning so much from all of you and have just been eating this elephant one bite at a time...

  • lg10
    lg10 Member Posts: 37

    coachvicky--I think the biggest struggles come with the all of the ups and downs. I can be fine one day and the next day something will trigger a lot of emotion. Yesterday I met with the plastic surgeon for a fill and we talked about how radiation could really change the outcome of my exchange. I have been in chemoland so long, I had forgotten about radiation, implants, hormones, etc. I opted for a single mastectomy and now I'm so worried about symmetry in the future. But I've learned that we can all deal with so much and we make the best out of these situations we didn't choose.

    hi CCNC--yes! I'm in Athens. I went to UGA as well and my family is all in North Georgia. I'm not going to St. Mary's for my treatment, but it is a great hospital. I've met lots of new babies there with friends. Treatment has really gone smoothly so far. It's been a whirlwind. We ended up sticking to our wedding date and I had my mastectomy a month before. Looking back, I don't know how I did that! I'm so sorry you had a hard time on Herceptin. I understand what you mean about certain doctors not wanting to take those types of things seriously. It can be so frustrating. Did you end up completing that treatment?

  • elainetherese
    elainetherese Member Posts: 1,635

    Bheg,

    You are not vain! After being told about chemo, the first thing I asked my MO is where I could get a wig. If the Paxman scalp cooling doesn't work for you, you can always get a prescription from your MO for a cranial prosthesis, and your insurance company may compensate you for the costs of a wig.

    I was relatively young (46) when diagnosed, and I found chemo to be manageable. With Taxotere, you may have some gastrointestinal issues. It might help to have some meds on hand if the diarrhea and/or constipation issues hit. It's helpful to keep a diary of your symptoms so you know what to anticipate after the first round. ((Hugs))

  • suburbs
    suburbs Member Posts: 398

    TriplePHTown, happy to help. After a year and some here, I finally figured out how to properly post a link. LOL. I had a double so I don't have a surveillance protocol for myself. For you, if you have dense breasts, then I would try to insist on an MRI. Mammograms are not always effective for dense breasts. There is a good Ted talks on this topic. I shall see if I can dig it up. It's a podcast. All the best

  • specialk
    specialk Member Posts: 9,261

    I just had to post this - I have called Vicky “coach” because I tend to use the first part of people’s member names. I very rarely drink a coke but I had a minor surgery yesterday and needed a caffeine boost with my Tylenol because I had a screaming headache. Pulled this can out of the box, so here’s to you my friend!

    image

  • juli24
    juli24 Member Posts: 80

    TripleP - I believe all of us have a little difference in follow up care probably specific to our circumstances. I saw my surgeon once per year for a check & 3D mammo. I did this for maybe 4 years until this year my MO asked me if I wanted him to just order the Mammo. All my doctors are in one Cancer Center & communicate with each other. I used to see my MO every 6 months but am now at every 3. I had a secondary cancer (female organs) pop up resulting in a complete hysterectomy. That combined with the fact that I decided to refuse AIs because the benefits, for me only due to horrible side effects, didn’t compute in my brain to be worth it. I still second guess myself on that decision but think it was for the best. Anyway, with those two factors, my MO changed my follow up to every 3 months or so for blood work including tumor markers and a breast/lymph node exam. He watches me closely. I get a scan once per year unless I have symptoms wherein a get them closer. I’ve had one nuclear scan & 2 MRIs. Guess I can say I get the book thrown at me!! I am friends with others who haven’t had any issues & only see their MOs once per year. The fact that I’ve had MS for many years, don’t usually write about it because I am 1 of a very few it seems with another immunity factor, might also play into the reason I have tons of appointments! Whenever you have questions ask away here. Someone probably has answers. Best advice, research & remember you are the consumer so demand the best. You are your best advocate! Juli.


  • juli24
    juli24 Member Posts: 80

    Jstarling - Congrats! You are 2/3 the way through. At this point I mantra was only.....2 more which sounded so much more doable than 6!

    Your RO will probably give you a schedule which will tell you how long treatment will be for. You can ask if any of those treatments will be “boosts” which is kind of an extra large dose. Each radiation treatment only takes a few minutes which fascinated me. During the first appointment they took a lot of measurements and, for me, placed 6 little blue marker tattoos. I had my left breast and underarm areas radiated. You might want to ask what they recommend using should you react strongly to radiation (burn). Everyone is different. I barely turned pinky like a sunburn. They did give me a variety of creams to try. I found I had better results using corn starch applied with a powder puff but you should ask their advice. I thought radiation was WAY easier than chemo but it cumulatively made me super fatigued. The promise that it gets better was very helpful. Good luck with your MUGA & the start of this new chapter. Will keep you in my prayers! Jul

  • juli24
    juli24 Member Posts: 80

    Sorry for multiple posts but wanted to catch up a bit as well as also congratulate Lg10 with her #5 chemo almost in the books!! You are truly an inspiration with all you’ve successfully come thru. I had a wedding after a much smaller operation as only the “mother of the groom” and it was hard. I hope you kick up your heels on your anniversaries! Marriage is such a blessing (almost as good as having grandkids 😉). I told my hubby he MORE than proved his vow of “in sickness & in health” during my cancer trials. He was my rock. All he said was “you’d do it for me” and I would. You have so many good memories and times ahead of you. I hope you keep in touch and post often. Hugs, Jul

  • lg10
    lg10 Member Posts: 37

    Thank you so much, Juli. That means a lot. My husband has definitely been my rock. I am so lucky to have him. Saying that vow a few months ago was very tearful for both of us. I know we will be able to get through anything after this.

  • Blownaway
    Blownaway Member Posts: 662

    Elaine-T - I was completely menopausal and had osteopenia by about 48. I later had a complete hysterectomy and I was dx'd with osteoporosis long before b/c. I took premarin and various bone building drugs for years until being dx' that's why I was put on Tamoxifen instead of an AI

  • ingerp
    ingerp Member Posts: 1,515

    Love the Coke can SpecialK!!

  • timetobebrave70
    timetobebrave70 Member Posts: 65
    Jstarling, I had my first TCHP infusion yesterday. Does it get easier or harder? So far no side effects for me. I didn’t get my neulasta shot because my oncologist wanted to see how I did.
  • Blownaway
    Blownaway Member Posts: 662

    I was reading Kae's post re estrogen and FSH levels and decided to check my own lab report taken about 3 months after having stopped Tamoxifen the 2nd time. My "estradiol was <15 and FSH was 62.. Does anyone know if this is typical of a woman WAY past menopause, with no ovaries, uterus, of normal weight and nonstop hot flashes?

  • shelabela
    shelabela Member Posts: 327

    warm welcome to the new ones! I have a hard time responding to everyone because I don't get on here daily. Sorry.

  • suburbs
    suburbs Member Posts: 398

    TriplePHTown, there is a limit to my posting you tube links from an iPad. If you google Ted talks + dense breasts, you will find seven videos on the topic. One is from a GP who is studying an imaging technique that is effective but not currently available, used for heart mapping. The intro has a good explanation of dense breasts and the efficacy of mammograms. I'm not posting this to scare people. For most mammograms are a perfectly fine.

    Bheg79, we have all been there. Welcome. The effects of chemo are cumulative so the challenges tend to build up over time. You may feel physically worse, but mentally, you may feel better each time as your anxiety lessens. You'll know what to expect and you'll gain confidence in your care team.

    The hair part is tough. The conventional wisdom is to cut your hair short, then when it starts falling out you may get frustrated and buzz it all off. It's tough. You may cry. If you want to save your hair, you can try cold caps. There are threads here on that topic. I had a few wigs stored in my guest room. I'd open the door and ask, "who wants to go out for dinner and a movie." They all had names. I found a site called wigsbuy that had very inexpensive wigs. I also found that using stretchy headbands with a fall (shoulder length bob) held the wig on tighter and covered the more obvious edges and seems. Hang in there. Keep us posted.

  • ingerp
    ingerp Member Posts: 1,515

    Speaking of hair. . . I decided last night to go for the long buzz tonight (and then immediately go out to dinner :-) ). I still have lots left but it's annoying with all of these long hairs coming off. I'm just tired of it. We'll see how keeping it an inch long goes for a few days/weeks. (Okay--who am I kidding--days.)

  • specialk
    specialk Member Posts: 9,261

    blownaway - yes, your numbers are representative of being menopausal. Here is a link to an article from this site:

    http://www.breastcancer.org/tips/menopausal/types/determine-status

  • coachvicky
    coachvicky Member Posts: 984

    Love the can, SpecialK!

    Vicky


  • CCNC
    CCNC Member Posts: 26

    Hi IG10

    Yes, I made it through and you will too. It is just a long process and it wore me down by the end of it. I worked through it all though, and it is all doable. I'm amazed at your surgery and wedding dates – good for you. I'm glad you didn't let this disease mess up your plans. It takes so much from everyone. My next challenge is a total hysterectomy because of tamoxifen. Keep in mind I have a family history of endometrial cancer, I am in the low percentage that it affects. It is the one cancer I always expected to get, the breast cancer came out of left field. My obgyn did not like how my body was reacting to the drug and with my family history it is the best choice. Even though we all have the same diagnosis we all have our own path because we are all unique in how our bodies respond to things.

    I am also having to do my lumpectomy again because it appears (according to the radiologist) the surgeon missed one of my tumors in April of 17 when I had my surgery. That I was not expecting and had a very stressful couple of weeks when I got the news.

    There is a film about how Herceptin came to use, called Living Proof (yes it's a tv movie with the drama etc.) but I read about it here in one of the threads. It will make you realize how lucky we are to have the drug even with some of the issues it brings. I will always feel grateful that the doctor who developed it didn't give up.

  • coachvicky
    coachvicky Member Posts: 984

    Responding to Bheg79, TimeToBe, LG10, and note to SpecialK

    Bheg79 It is going to be OK. One day you will look back on this journey and realize how well you did. It just takes time. I know you are scared. I was too. I think my husband was more scared and yet he portrayed a solid rock of strength to me.

    Remember, it is YOUR body. The people on your Medical Team work for you. If you want anything, tell them. I think sometimes as women we take care of others so much that we forget to say "hey .... what about me?" I heard a Treatment Nurse ask an elderly woman in the chemo chair next to me why she was lying about being nauseated. The elderly woman replied that she did not want to be a burden. My point? If you are sick, uncomfortable, anxious what ever, tell your treatment nurse and ask for help. There are wonderful meds to take care of most everything.Always state that you want your Herceptin to be infused slowly. SpecialK can add the technical benefit to this.

    First, go get a complete dental cleaning before your 18 June chemo. Tell your dentist your treatment and ask what advice he / she has. Thanks to my Dental Hygienist and her recommendations, I had no mouth problems.

    I took the dissolvable mint Zofran for nausea. I never vomited. Not once. I took a boat load of Zofran and it worked. My Primary Care said he had never written an Rx for so much Zofran!

    My Dermatologist Nurse Practitioner shared that she attended a Gel Cap Therapy session at a recent conference. I had shared with her that I used them. She said the speaker stated that 15% of female cancer (all cancers) patients refuse treatment because they do not want to lose their hair. Others have recommended forums on BCO reference gel caps. Go there.

    If I had to do it over again, I would have wet my hair and changed the part frequently while using the caps. I lost about 40% of my hair from start to finish. I think it was because we froze the caps in the freezer the first time and not in dry ice. Keep a short hair cut and the caps will make better contact. It is not about vanity .... I think it is about controlling something or at least it was for me. If there was one thing I got from chemo (other than living cancer free) it was a really good haircut. To date, I still wear my hair short. And the JOY of little leg hair and armpit hair. That part of chemo's side effects I still enjoy!

    I got my bag packed the night before chemo. I had my I-pad, socks, stuff to read, puzzles, snacks, gum, lots of water. That simple task seemed to get me focused and ready.

    My girlfriend from high school who always sat in front of me when we were in alphabetical order, shared that when she went to chemo she was dressed to kill. Heels, make up, the works. I did the same. For some reason, I felt better about me.

    I urge you to walk, move, exercise the day of treatment and afterwards. Do whatever you can to get the chemo thru your body. And as SpecialK reminds us, hydrate, hydrate, hydrate.


    TimeToBe ... I don't know about waiting on the Neulasta ... I took it the day after each session. I found checking in with the Nurse the day after chemo was very helpful.


    LG10 ... It is a roller coaster, isn't it? June marks the 2 year point anniversary for much of my journey. I am unsure when I stopped crying so very much but I did and, in time, your emotions will settle also. I still cry sometimes. Mostly now they are tears of joy. I am so happy I got a second chance at life.

    Have a great weekend Ladies!

    Vicky


  • Tresjoli2
    Tresjoli2 Member Posts: 579

    so my FSH is 6 (not menopausal) and my LH is 2.8 (not menopausal) but my estradiol is <5 (menopausal) and I have not had a period in three years. No one has an answer for me. My gyn says I can get pregnant and should get an IUD, my MO says I cant get pregnant and not to worry about it but that might change the farther out I get from my last lupron injection, which was a year ago. So I feel your pain ladies. Technically, my labs cant be the way they are...but we had them done twice and they came out the same!

  • specialk
    specialk Member Posts: 9,261

    tres - girl, you’re complicated! I hope things sort out - is the thought that the Lupron is responsible for the discordant results and that you will normalize - as either pre or post - once some time passes?

  • kae_md99
    kae_md99 Member Posts: 394

    SpecialK,

    my onco said that although my FSH is low, we are only after my estrogen level which is very low at <6, where we want it to be..i am not menopausal and i could technically get pregnant..my ovaries are just "asleep".i always thought that if estrogen is low, FSH will be high due to negative feedback mechanism.i guess that is not always the case...

  • susanhg123
    susanhg123 Member Posts: 257

    Good morning ladies. So many new names and faces since i last checked the board. It is always sad to see new faces in a club no one wants to join--but one of the most important clubs in mylife.

    Exciting news. i am relocating to Colorado! I will be near my youngest daughter, a major airport, great weather, and. Away from ^*$&#&#**(^^.

    I thought about doing a search for Denver Metro or Colorado--but decided to go to this group first.

    Does anyone here live in the Denver metro area? i will be working in Colorado (teaching nursing still) and living---well not sure yet. I will go to the area in a week or so to secure rental property while I decide where to land. I hope to get oncology names from this group. I do not need (YAY) big bad oncology--but follow-up and management. Even more important---I need a friend! I am so looking forward to this life change.

    Hoping to hear from a new friend! Thanks ladies.

  • TriplePHtown
    TriplePHtown Member Posts: 40

    Juli24 - Thanks for your info on the follow up!

    Suburbs - Thank you for suggesting the Ted talks on dense breasts. Will check those out.

    My cold-capping experience ( sorry can't find who asked): Cold-capping was tolerable and worked pretty well for me. My part is wider & have some thin spots on the side, but its not too bad. I actually dyed my hair about 4.5 weeks post chemo bc I had 2 inches of grey. I had used Style Edit to cover the grey but needed clean hair for surgery so took the risk of coloring it and it worked decently & definitely gave me a boost.

    My meeting with MO is Tuesday. Curious to hear what he thinks on treatment plan. My breast tumor post chemo was not one spot like I thought, but consisted of 10% of original area. Also had some atypical cells in benign breast tissue. Thank you all for being here and giving such wonderful support and advice. Please send positive thoughts and prayers as the next steps are discussed.

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