TRIPLE POSITIVE GROUP

ElaineTherese

Shelabela!

Awesome news! Great pictures! Thanks for sharing....

Tresjoli2

Woooooooooo Hoooooooooooo Shelabela !!!!! Whoop Whoop! You go girl!

Photo - it was me! I found that the Lupron caused many of my symptoms, not the tamoxifen. My MO and I decided that tamoxifen was enough, but that was based on my particular cancer's characteristics.

-Tres

Photogirl81

hi Tres,

Oh, okay! Mine was ER an PR sensitive (80% and 30%) and my ovaries seemed to be too strong, so we are doing everything to stop the ER-making. I'm only 36 now, so I guess it might take stronger actions to keep on this artificial menopause.

Deni, thanks for the kind words. This group helped me so much already, but I somehow wasn't brave enough to actually post anything. Not anymore. I think the more I come to terms of what happened to me, the more relaxed I feel talking to others about it. But still a long way ahead. I find it much more challenging to cope eith the emotional/mental part than it was with the physical part of it

rljes

Hi Everyone,

PoseyGirl, gotta say, you made me smile.  

GodsWithMe - I dreaded/feared getting a port. (I have skin issues) but I have had no problems - I even forget its there, except when I accidently hit it.   But, I have pour veins, they roll and collapse. I had no choice, especially having Herceptin for a year. Its so very convenient.  Found Living Proof on Amazon.  Now I just have to figure out how to work my DVR. 

I am afraid my hair won't grow back.  As a baby, my hair was so awful all my baby pictures are with a bonnet.  Pixie cuts growing up.  I went the perm route - shag cuts, at least I don't have to spend time with the blow dryer, curling iron, gel and moouse.  I'll learn to rock the scarf! 

Later, rj

Cherry-sw

Very interesting, HapB, thank you for sharing

coachvicky

shelabela ... Congratulations! BTW, I like your shorter hair a lot.

Possey ... those are awesome curls.

About the foot pain and such ... Many, many years ago DH and I went to a "wellness seminar" at our health center. One of the speakers was a Physical Therapist. He said that he did not care if we ever exercised. He only cared that we stretched everyday and purposefully.

Know what my dogs do every morning when they first awake? They stretch. Even my chubby Basset can stretch!

I do some simple foot rotations, side to side pointing, stretching my hands, arms, legs and so forth.

I can tell the difference on days I skip this simple stretching.

I think this might be worth a try.

Vicky

red332

Sorry, just getting back here after surgery (I had a post-chemo re-excision on Tues to hopefully clear the margin and am waiting for pathology).

Re plantar fascistis:

Taping (by a professional) does a lot to relieve acute pain, but I found it very uncomfortable.

Longterm, custom orthotics are the most important, but they are expensive and take a few weeks so if you think this is temporary, it may not be worthwhile. Also for longterm, the shoe brand Vionic has built in orthotics for sandals, etc that you can't wear your real orthotics with. In the meantime, pre-fab orthotics will help somewhat. I like profoot brand. I also wear running shoes (the stabilizing kind-I buy Mizuno Wave Inspire but most companies make a stabilzing shoe) every day unless I have to look nicer (and replace every six months). V

Very very gentle stretching of the back of the leg can help. Will try to find and post the exact instructions or you may be able to find online. Go very easy at first.

I did PT, and had several cortisone shots (but that's down the road if you don't get relief) and wore a boot for a few weeks when I had a flare-up. All helped temporarily but nothing has solved the problem for me longterm.

There is a treatment that involves sending sonic waves through the foot that my podiatrist recommended that is supposed to "cure" PF 80% of the time. However, it's not covered by insurance and in the US costs about $2k per foot. Coincidentally, the plastic surgeon I consulted with had done it and it worked for him I haven't done that as it's mostly under control right now and I have enough medical bills thank you!

deni1661

Hapb thanks for sharing the article. It's good to know there are less damaging treatment options being tested.

Coach, I agree with you and your dogs- stretching is good for many reasons. My PT taught me a number of stretching exercises after my recon. I miss doing them and can feel the tightness creeping back in. I have restricted movement now i.e. due to my shoulder but I stretch the body parts that I can. We have to improvise to get past these roadblocks 😊

BTW - my chiropractor healed my plantar fasciitis problem. It took 3 sessions and has not returned for 3+ years. Also shoes make a big difference

Cherry-sw

coachvicky, red, what can I say)) Just came home from my 3 km run, jumped into the shower and landed in my bed in my robe thinking let’s check what is going on our TP-thread.. Of course, I did not stretched, not because I do not want or am lazy, I just forget about it even though my PT told me to do it every morning and every evening. So, after that post, I will go and stretch, because I am not lazier than your basset)) Btw, I love bassethounds, in case you have any picture please feel free to post it.

And thank you everybody about your words of advice on plantar fascitis, it got somewhat better after the taping and inserts but today I run for the first time this week, have been running on my threadmill otherwise, so it may get worse again. And the scale still show same weight after two weeks of exercising

kae_md99

1. photo on top is first day of chemo,below is today,last herceptin

kae_md99

i look bloated! could it be the arimidex?..

Photogirl81

Kae, congrats on your last Herceptin!!! Yaaay! You did it! You rock! I love your smile (both pics) and you look awesome! Way to gooo!

ElaineTherese

Awesome news, Kae! Thanks for the pix.

kae_md99

thanks ladies..

Jumpship

I need to be talked down from my ledge. My ca 27/29 numbers just doubled. Below 35 but doubled. Since mastectomy they were fairly stable 10-13. The only change is moving from tamoxifen to femara. My panic is mostly due to know that this marker was really abnormal years before breast cancer was found but went to normal during chemo. Anyone have anything similar

shelabela

Kae that's great! So happy you finished herceptin!!!

Vicky, thanks i get a lot of compliments on it short. I've never had short hair before.

SpecialK

kae and shelabela - looking good ladies!

jumpship - one of the reasons many oncologists don't rely on CA27/29 is that it is a mercurial marker - influenced by many things. For some patients tumor markers are reliable, for others they don't accurately reflect disease progression. Inflammation can drive the number higher, and if you are experiencing any joint pain from treatment or Femara that may be responsible. It is important to remember that your number is still in the normal range. My oncologist does do tumor markers, mine were always in the normal range - but never below low 20's - until the end of chemo, when theyjumped to the mid-60's. This was due to inflammation from chemo and the number returned to the normal range after a few months. My markers are different every time - sometimes bumping right up against the top end of the range, and have occasionally been above the top end of the range -usually coinciding with some type of injury or inflammatory situation.

kae_md99

thanks shelabela and special K

Jumpship

Thanks Special K!

coachvicky

Kae ... Last day! Congratulations! You look wonderful.

Cherry, Have you considered going gluten free and lowering your carbs? I am convinced that gluten adds to my inflammation and join pain.

Vicky

Cherry-sw

kae, congratulations on your last Herceptin! Must medel awesome. Six months of chemo behind me, first week of rads done, and still last Herceptin feels so far away for me

Cherry-sw

Vicky, I stopped eating any kind of bread a week ago, trying not to eat any carbs either. No potatoes, no rice or bulgur. Ok, tried a tiny slice of my home made banana chocolate bread, but we are talking about tiny. I have a leafy green, tomatoes, cucumbers, bell pepper, onions salad in the morning with either tuna, or egg, or organic chicken breast and a bowl of fruits in the evening. This is to lose all weight in the first place, today I saw this scale to move a little bit, I thought I would cry), but if it takes for me to live on the salad from now one, to get on the good side of the statistics, well, kale, as much as I dislike it here I come.

tld2017

Okay, ladies, just had my first oncology appt. I have not figured out how to put all the info underneath the line under my post yet. If anyone can share the link with me on how to do that, that would be great!

I am triple positive, stage 1, grade 1. Sentinel node biopsy and lumpectomy done. HER2+ was confirmed twice by Mayo Clinic. NO lymph node involvement! Here are some numbers: 1.3 cm tumor, ER 90%, PR 75%, Ki67 2-3%. Oncologist is leaning towards giving me 12 weeks of chemo - Taxol, weekly for 12 weeks, with a combination of Herception and Perjeta for 12 months. 6 weeks of rads thrown in there somewhere along the way after chemo. The other option is TCHP for a total of 18 weeks, 6 times at 3-week intervals. Also including 12 months of Herceptin and Perjeta. Does anyone have any thoughts on any of this? I was diagnosed in January and am very new to this, not having known anyone closely that has gone through it. Thank you in advance for any thoughts that you might share!

coachvicky

Cherry

Sent you a private msg.

Vicky

Cherry-sw

tld2017, I am not a specialist, not at all, I am just a patient like you and am turning the internet for information not because I want but because I have to. I know that Herceptin was first tried with chemo and therefore is given in combination of some but chemo is also effective in killing rapidly dividing cells which is a given with Her2 pos, so chemo is a value-add as well. But your KI67 of 2-3%, what will chemo be killing here when only 2-3% of cells are dividing? If it wouldn’t for Her2 pos there would be no way you would have been given any chemo. Are you sure you are going to have Perjeta in 12 months? I thought it was given in 3 months only, please anyone correct me if I am wrong.

Cherry-sw

coachvicky, you only posted Cherry...

tld2017

Thank you, Cherry, for responding! Your question is a good one. The oncologist said that HER2+ must be treated with chemo. He did say that if I was not HER2+, I would not be getting chemo. Mayo Clinic checked the HER2+ diagnosis twice. I have his written notes at home with me and it definitely says Ki67 is 2 to 3%. He has also written down that Herceptin and Perjeta would be given for 12 months. Because he felt my case was unusual (HER2+ is not usually stage 1, grade 1), he was going to talk with the other oncologists in his office to confirm that they thought the 12-week route would be best for me, rather than the 18-week chemo. So I don't know... My breast surgeon also told me at my last visit with her that chemo would be absolutely necessary because of the HER2+. Eeek, this gives me anxiety!

Homemadesalsa

Hi Cherry- I can't speak to the Ki67 data, outside my knowledge base. But yesterday my oncologist said that a new study suggested that Her2+++ people should get, in addition to Herceptin for a year, Perjeta for a year as well. I am getting both of those with Taxol for 4 doses every 3 weeks post-AC. He did say that it's a new thing and might not make it through the insurance clearance.

Photogirl81

Dear tld2017,

Sorry to hear you are facing these troubles, but trust me when I say, you are in a really good place in this group. There's a lot of knowledge here and even more love and support.

Your situation is really quite unique, but based on the ton of stuff I have read, you still would benefit from chemo. Taxane types (Taxol, Taxotere) work really well with Herceptin. Please don't panic, chemo is doable. I worked during the whole thing, sometimes with the help of a mild pain killer (Voltaren dolo - not sure if it is available where you are, but it helped with the SEs of my Taxol treatment), but did not cancel any assignments. So I'm sure you can do it!

Cherry, the last Herceptin will be here sooner than you think!

LaughingGull

Hi ladies,

Just checking in and saying hi. Congratulations to Shelabela and Kae on the last Herceptin! I will be getting it for a year too. I didnt realize one has to get herceptin in an infusion room setting. Makes sense but I had simply not thought about it. Taking things one day at a time I guess.

I just had my second Taxotere + Herceptin + Perjeta yesterday and I will be getting Neupogen for a few days. Started having tingling in my fingertips a week ago -neuropathy is here! My MO talked me against icing hands and feet during the infusion to prevent neuropathy. He says the icing may prevent the chemo from reaching fingertips but the damage to the nerves that causes neuropathy happens at a higher level -up in the arm. Bottom line, he made sound the icing useless on top of a royal pain. Still, I had cold water with me and I dipped my fingers in cold water during the Taxotere infusion.

I am losing my eyebrows and thinking of getting some type of temporary tattoo, I was reading about microblading today. I am using a pencil these days but my life would be easier if I didnt have to do it -I am very lazy when it comes to applying make up etc. Did everybody lose their eyebrows with chemo? I had thick, coarse eyebrows and I didnt think it was possible for them to fall off completely.

Having a not-so-good day today emotionally. Today I feel convinced this disease will kill me and I wont live a long life, which overwhelms me with sadness for me and my children. This comes after a few weeks of feeling optimistic overall. I guess it's normal. Also starting to realize things won't be the same as before. This was triggered by talking to somebody who doesnt know I have cancer, and I hadn't seen for a few months, and who was treating me as before -which is something I crave, but I am starting to realize it doesnt really make sense anymore. She was suggesting these plans to go to this salsa class and this and that and I was listening to her like she was a carefree being from another galaxy, if you know what I mean.

Love and peace to all.

LaughingGull