TRIPLE POSITIVE GROUP

ang7894

Awesome --- Lago Congrats..

Kthielen

Comgrats Lago!!! Does your MO do scans or blood tests??

lago

Thanks everyone.

Kthielen my MO only does scans if you have symptoms. She doesn't do tumor markers (if that's what you mean by blood tests) because they are unreliable.

rosesrx

Sweet news Lago. Continue to dance with NED!!!

CassieCat

Great news, lago!

momwriter

Congratulations, Lago!

Gretagirl

Lago wonderful for YOU!!! Celebrate! Thank you for all the info you share

Kthielen

lago,

Sounds like my MO....was just curious:)

Gretagirl

Chemo three tomorrow and appt with urologist Thursday. MO not happy with the bladder infections I keep getting. Nervous about this my sister in laws boyfriend just got diagnosed with aggressive bladder cancer yesterday and his prognosis is not good. My mind is running anyway with "what ifs...."

ashla

Congratulations Lago!

Such wonderful news... Makes me teary eyed...

Do you get to throw away the effin lifesaving AI's now?

ElaineTherese

OY, Gretagirl. UIs are the worst! I'm getting an MRI tomorrow to check my "thing on the hip." It shows up on PET scans but not CT scans. If it can be located via MRI, we're going to biopsy it. Big week for both of us!

lago

ashla next April will make 5 years on ESD. My oncologist had more than hinted she wants me to stay on it for 5 more years. She considers me high risk due to tumor size. I will need to see some numbers. Will be seeing her at the end of October.

txmom

Gretagirl, I can't remember what thread I read this on but someone else posted about difficulty with bladder infections. She had some testing done and had some "burning" on the inside of her bladder from chemo. She had to increase her fluid intake especially during and after chemo infusions. Hope this helps. Try not to worry.

Congrats Lago!

SpecialK

I had UTIs during chemo and for a bit after - totally from the soft tissue irritation caused by the chemo drugs. Once I was PFC for several weeks, no more problems. Maybe add some cranberry juice to your hydration.

Moonflwr912

Congratulations Lago! So happy for you!

Five years you struggled,

With chemo and surgeries;

Time was not wasted!

~~~~♡~~~~

For UTI, I used Azo UTI for pain and took cranberry pills. The pills stopped the Pain fast. The cranberry seemed to keep it from coming back. If anyone has trouble with yeast, the AZO yeast pills worked wonders for me. It's hard to believe they work so well. At least they did for they didn't clear it up n two days I went to the drfor antibiotic.

JenPam

Yay Lago! Wonderful news!!

ashla

Lago ,

I think they're heading in that direction for all of us on the hormonal therapies. For me, this has been by far the most difficult of all the treatments. I sailed through (relatively) the rest but I've hit a wall on the AI. My body is telling me no mas...

So happy for you:))))

lago

ashla I agree that the ESD had been more of a challenge although my issues aren't as bad as others. I knew when she said 5 years that would be. As someone who wasn't on any meds before this med has me on 2 other drugs now. 2 of the 3 give me SE.

I might just take it a year at a time. I will be taking another 1 month bread after 5 years just to see how I feel.

JenPam

Lago, what is ESD?

geewhiz

ESD = Estrogen Sucking Drug (In Lago-speak)

I am postmenopausal (49 years old now) but remained borderline with my hormonal panels for almost 4 years and at my 5 years we decided to LEAVE me on tamoxifen for 10 years. My onc said the studies comparing leaving a postmenopausal on tamox vs an AI did not show a major difference, and I tolerate tamox relatively well. He did say that more long term studies were really needed.

ashla

Lago...

It's my only med also but it's been an enormous challenge deciding what to do. Do I live this way or take my chances? Told my MO that we fixed the cancer but this med has broken everything else. I need a dozen more meds to ease my S/E's.....

JenPam

Aha, thanks! I'm more concerned about the projected 10 years on Femara than I am with all the other treatments, but I'm trying not to cross that bridge yet.

ashla

Geewhiz and JenPam,

Remember the problems I am having with the AI DO NOT happen to everyone. I had all the side effects from day one but they were very manageable until 2 1/2 years out. All of a sudden I hit a wall. Have no idea why.

My MO is putting me on tamoxifen in 2 months. He says there is only a 4% additional benefit to the AI.

JenPam

Thanks, Ashla...I know I'm borrowing trouble since I haven't even started hormonal therapy yet. I keep reading about terrible SEs though & have trepidation. It's good to know that I have the option to move to another category of drug. Why are you waiting two months to move to tamoxifen?

ashla

It'll be the 3 1/2 year mark on anastozole and he's been seeing me every 2 months to see how I'm managing. First I had a month off and a bone scan to rule out mets. No mets & Felt great!!! Then he switched me to aromasin... I had said Femara but it was Aromasin...Every other day first week and when I went to every day it was worse . Literally felt sick.

Now we're doing every other day back on anastrozole . Not supposed to be done that way Kinda think he wants me to hit the 3 1/2 year mark if possible.

JenPam...They are making so much progress....especially for us Her 2 pos... That by the time you are 21/2 years out you may not need an AI ! they'll probably have new, improved treatments.

How I try to live these days. Sometimes I must remind myself.

"Let us not look back in anger, nor forward in fear, but around us in awareness."

― James Thurber

geewhiz

Thanks Ashla,

I figured if it ain't broke....

I get minor side effects from tamoxifen - hot flashes, joint pain off and on etc. I just mentally did not want to upset the apple cart at the 5 year mark and make the switch to an AI if tamox had bought me 5 years.

I am exactly 1 month shy of 6 years today, and I will take that pill forever if they let me.

ashla

Geewhiz...

Wonderful news that you are hitting the 6 year mark . Just wonderful

zjrosenthal

Anyone else here having bad joint and muscle pain, stiffness and leg, foot and toe cramping from herceptin/perjeta? Love, Jean

SpecialK

zjrosenthal - are you taking your Femara? It is hard to say which of those things is related to what - also, how fast are your infusions? Sometimes getting a more rapid infusion of Herceptin can cause some muscle and joint pain, and a lot of oncs speed it up when you are done wit the chemo portion.. Any of my joint pain, stiffness, and toe cramping came from Femara - but I had some wicked joint and muscle pain from my first Herceptin only infusion run at 30 mins - slowed the subsequent ones down to 90 mins and had no further problems that I could correlate to Herceptin.

Jerseygirl927

triple + is still serious, my surgeon cleared me a few weeks back, but the 5 year plan is probably turning into 10 year plan depending on age. Seems protical is thinking this way according to the dr. We shall see, I for one will rejoice when they have the cure, and they release it. For now, just waiting patiently for me to feel good about this whole thing. Don't know if I could ever rejoice.

Glad lago you are at this point and free from this horrid disease. But on a whole all cancers are becoming prolific if you think about kids getting cancer before they are adults. Adults can't just die in there sleep anymore, it has to be horrific disease , accidents, or murders, or hate. Just in one of those moods, sorry for the rant cancer sucks. Tired of pain, aches, numbness, triple anything.