TRIPLE POSITIVE GROUP

Juli24

You might want to purchase a few of Dr. Fuhrman’s books before making a decision on attending one of his retreats. He also does PBS specials you can watch for

Tresjoli2

Thanks Shela!

deni1661

Thanks everyone for the well wishes on my retirement, it means a lot to me.

Kattis, it is so nice to see you back. Good for you that you decided the new job wasn't worth the stress - a very empowering move on your part! I think the spa/retreat idea is a good one as we can all benefit from anything that puts the focus on wellness. Enjoy your trip to India!

Elaine, I hope the school strike is short lived

Ingerp, enjoy the rest of your time this week with your sons. I took a vacation before I started treatment and it cleared my mind of all worry and fear about what was ahead. I think getting away from our daily life, even if only for a day or two, helps to "reset" our minds and flush out all the anxiety!

Cherry-sw

Hi all, thank you for your concern, my FB group posted today asking how I was doing and my manager also been in contact with me. I do not know what happened but I am trying to change the pattern. We had 10C today, this is freaking warm for Sweden this tome of the year and I did not know whether I should have thin hat during my 10 km power walk. At rhe end I went with my thicker hat, the thin one makes it so obvious that there is no hair. I mean, there is, but still not enough for me to feel confident( But I run half of the distance.

Posey, I will always check on you, on everybody, I promise, I am not going anywhere, these boards kept me safe once, I owe it to all you.

Cherry-sw

deni, congratulations on your retirement, when Iwas younger I just did not think about that much at all, then I saw my parents retire and I actually saw how happy they became with their six month staying at their country side cabin, gardening, all those peppers, cucumbers, squash and tomatoes, oh, tomatoes!! my mom can talk about her growing them from the seeds (she has some hybrids she likes), then planting them and then, oh, my, there was that thunder storm just right after she planted and she had to plant them again or what was left of them! and my father said, that we had tomatoes only because she could save them)))

You know, before I thought that getting old was so unfair, now I am really looking forward and hope to have a chance and a privilage to grow old even if I am so afraid to jynx things.

Cherry-sw

shelabela, coach, I know, I also say that cancer is a new strong, the most awful thing is that no one is prepared for it. It is so stigmatized and aggressive and people do die of it. My psychiatrist, the best investment of my time actually, because my councelor and psychiatrist basically tell MO what to do now)), well, the former said, cancer is so common nowadays and I said, you say so but nobody is prepared for this diagnosis, I was not, and neither of you two are. I am making the best of it but only because I literally have no choice.

Cherry-sw

Tres, I had copper UID since I had my eldest back in 95 and until 04, actually the same one, never had anything hormonal, never took birth control pills. They took it out because I sensed some smell, not heavy but still, I went to my gyn and she said, you got older, your immune system cannot battle the growth of yourbacteria the same way it used to, we have to take it out, and we did. The only SE I ever had with it was my period being longer, like six days instead for three-four.

My eldest decided to quit her birth control pills when we found out about my bc and I she has a copper UID now, she got heavier and painful periods with it even though the UID itself got much smaller since the 90-es.

Cherry-sw

Kattis, thank you for posting this info, I have not been to Sri Lanka but the friends of mine who went there were very pleased, it is a beautiful place to just walk along the beach

Cherry-sw

Ingerp and all, preliminary)) we have not decided yet, will meet the breeder and the puppies in April, but hopefully this little fellow will move in with us in the end of the next months

PoseyGirl

good answer, Hap!!!!

Cherry, what an adorable pup!!! What will you name him? Trip for triple positive? Maybe not.

Xoxo to you for watching out for me .

Cherry-sw

HapB, as cynical as it sounds but your are so right, they mean well though my councelor and the psychiatrist, they got me through very difficult time, they try all their arguments and all I cannot imagine working like this all the time.

This is a Corgi Pembroke, the kind The Queen used to have))

Cherry-sw

Posey) always, we have to stick together)

We will name him... wait for it... Mr.Darcy))

PoseyGirl

thumbs up...that’s hilarious and cute

Tresjoli2

thanks cherry. Struggling with this decision. Going to get a 2nd opinion from MO. Just feels like another one of those decisions I have to make where I have to choose amongst crummy options. I still have to talk to the hubby...he could also make a decision to solve this issue. But I want to fully understand all our options before I discuss with him...

I have my annual scans coming up in a couple of weeks. A dark cloud always starts to descend and weave it's way into the dark corners of my mind as scan time approaches. I get flashbacks that are so vivid. Does that happen to others? Smells, sounds, they all seem to set me off. It starts with my birthday, because I went to Vegas to celebrate my 40th with all my girlfriends, and when I came home had my annual physical where my gp scheduled my first mammogram. Then boom! Cancer. So as soon as my birthday starts to approach, the flashbacks start, and they don't stop until I get my clean scan...so odd.

Ingerp

Cherry don’t post too many pictures of whichever one you end up with—makes me want another Corgi pup!! ;-) (FWIW—the one we have now is Figo—named for a Portuguese soccer player, but with our first Corgi pup, a friend of one of my kids was running errands with us and we parked next to a Mini-Cooper. He looked over and said, “Hey that looks like your dog!” so we named him Cooper. Great name for a dog with short little legs!!)

Gudrun

Hi everybody,

Again I would need some advice or experience from you ladies:

My daughter had her 22nd Zoladex (i. e. 22 months) shot today. We've just phoned and she revealed to me that she is likely to stop this treatments and just going on with tamoxifen alone due to increasing sadness and a feeling of not being herself anymore: I don't know who I am anymore, she said while sobbing. She has been so tough so far, never complaining. Needless to say it breaks my heart seeing her so down.

I know very well that it is my daughter to decide what to do, and not me!

However I have some questions I'd like to ask:

1. Is there a trial that shows a significantly better benefit for more than two years of Zoladex together with Tamoxifen compared to only two years of Zoladex with tamoxifen?
2. Have you been in a similar situation? What did your doctors recommend or what did you do?
3. What is your opinion?

I would so appreciate any of your answers. Thank you in advance. Gudrun

Tresjoli2

Gudrun - I wasn't on zoladex, but I was on Lupron, which does essentially the same thing. I was miserable. Depression crept in, my joints hurt, I felt a hundred years old on the drug. I had terrible migraines. I cried all the time. My doctor told me that in my case, with no node involvement, and such a small tumor, that she was ok with me stopping. As it appears your daughter is even younger than I am, and with more advanced cancer, I am not sure what her MO will recommend. For me, my quality of life was so poor, I got off the drug. And it was like I got my life back. I hope that helps.

Gudrun

thank you so much for your reply Trèsjoli,

that really helps in so far that you actually got your old self back after having quitted the Lupron. My dd's doctors totally differ in their recommendations, from leaving Zoladex as soon as there are any SEs to 5 years in total. So their advice was not of concrete help.

May I ask how long you took the Lupron alltogether?

Best wishes, G

FaithHopeLove84

I did it....Bilateral Mastectomy completed! I unfortunately did not have full PCR. My tumor "bed" decreased from 2.3 CM (larger than I thought) to 0.5 CM of "microscopic focus." In addition, my lymph node that was once positive had isolated tumor cells, which my doc said is negative? They removed a total of 12 nodes from my right side that were all negative!

Radiate or not radiate is my dilemma. I have met with 3 radiation onc's who advised that it is very "grey" on whether I need radiation. One even said in their "heart of hearts" they would not do it because chance of local re-occurrence is less than 2% ('Her2 is more likely to distant re-occur?).

I am still completing my herceptin/perjeta and lupron regimen until 10/18. At that time, I will continue with Lupron and start aromatase. Did any of you choose not to radiate and had a local re-occurrence? Does anyone have any articles to share on radiation for Her2/Triple Positive patients?

Thanks all!

Kattis894

I am checking out the Dr. Fuhrman's Mediterranean Retreat for sure, it is way closer to me..:) thank you so much...

coachvicky

FaithHopeLove…

Best wishes on a full recovery from your BMX. Keep your arms down and tight. Your drains will be out quicker.

Your results sound wonderful. I bet you are happy!

My MO considered radiation for a fleeting moment. I did taxotere, carboplatin, and herceptin..

I have never looked back on my decision for the BMX. I got my 3D tattoos last week.

I saw my Primary Care this morning. It was the first time he had ever asked to examine my chest / breasts in this 21 month journey. He said I want to see the 3D tattoos. His mouth dropped. He said that he was afraid of how the the tattooing would look (and I know this as he is a very concerned MD). My husband was there and said I told you she looked natural.

Warmly,

Vicky

Tresjoli2

2 years gudrun...

coachvicky

HapB...Everything is done. I may in a few months decide that I want larger looking nipples. These are nice and rosy ... like the girls in the nasty magazines. LOL.

Vicky

Blownaway

Special K - quarterly echoes were not enough for me. I had gone into full heart failure before the 7th herceptin infusion. That's counting the 4 TCH infusions

Blownaway

tresjoile - After 3-1/2 years, I can only taste sweet, salt, sour but cannot differentiate one food from another. I have no sense of smell at all any more but sometimes that's a good thing. I miss roses, gardenias, wisteria... I make my hubby smell the milk before I use it. Food poisoning is a real threat to someone who cannot taste or smell

Blownaway

Hap B - I hear you but then I read posts like the one someone posted 2 pages back that said "without herceptin,HER2 patients just simply die". OUCH!

Kimberbir

Hi everyone its been a couple months since I have been on here but am glad I stopped by to see what is happening! Its good to read everyones posts and know I am not alone and am experiencing some of the same things as you other gals. Coach Vicky and Special K how great that you 2 got to meet and you both look great. I have a question, does running the herceptin slower make it easier? I started taking anastrozole two weeks ago with the herceptin and I am struggling. Mostly with body aches. Any input is appreciated. Stay strong Ladies!

Anonymous

tld-I iced my fingers and toes for nail protection. I did the same thin special k did for neuropathy. My main problem was my hands and feet were constantly ice cold. My husband would put hot water bottles and heating pads in the bed for me cuz they just wouldn't warm up. During infusion, I used zipper insulated lunch bags with frozen peas or ziploc ice bags. None of them matched. It was quite a site. My nails were good until herceptin when they got so thin they were like baby nails and painful. I couldn't do anything.

Specialk-I'll be in Bradenton for a week for a family vacay in June. Will it rain all week? I'm ok with hot. We have pools

Tresjoli2

blown away I'm sorry it didn't come back, that stinks...

SpecialK

blownaway - just as there are some who tolerate Herceptin without a drop in LVEF, many are like me and have a slight drop that didn’t prevent treatment and returned to normal after treatment, and then there are some like you and hap who have issues early on. It’s unfortunate for some that one treatment begets another, I wish that had not happened.

fluff - June is a might rain, might not month in FL. The good news is that showers are usually in the afternoon, as the humidity builds, and the showers are pretty short. I’m about 45 mins north of Bradenton.

Kimber- how long is your infusion now? I recommend 90 mins, but whether that helps depends on what is causing the pain - the H or the anti-hormonal