TRIPLE POSITIVE GROUP

Welcome, Tinaziller! We're so sorry you find yourself here, but we're glad you've joined our community, and hope you find the support and guidance you need here!

The Mods

Hi,

I am joining this group, unfortunately. Dx June 19th, port insertion July 23rd and chemo starting on the 24th. Learning so much from these forums. One thing I’ve noticed is that ILC triple positive isn’t that common.

My CT scan came back yesterday and was all good except my right ovary was over double in size. So, since it was late in the day on Friday I don’t know what they are going to do about that but I assume an ultrasound will be ordered. I was planning to go meet my new grandson next week in California but realizing now that may not happen

MACTAZ,

I'm sorry to hear that your AI has caused so many problems! I've had the opposite experience; my side-effects have generally diminished the longer I'm on Aromasin. (Not sure about the depression -- I'm still on Celexa for that.)

Yes, definitely ask for an AI vacation! I hope your oncologist supports your request. We're always here for you. ((Hugs))

thanks boogirl for the info on SQ Herceptin. I’m hoping it becomes available soon so I can switch. I have 2 more TCHP then finish out H until April next year.

My periods started today and it looks like regular bleeding i used to have before chemo. Any of you have had periods while taking chemotherapy?

Neeli,

I had periods for the first four months of chemo. They stopped during the fifth month, and haven't come back. (I was 47 and pre-menopausal.)

Thank you adhoney,,

I have learned so much from these forums already. I see your MX is coming up later this month. Good luck. Mine won’t be for another six months but would love to hear how it goes for you.

Stay strong

MACTAZ, feel free to vent, that’s what we are here for. I had my baseline bone scan and my t-score is -2.2. I am not on AI, I am on tamoxifen and triptorelin. I had some joint pain on knee and hip for a week and then it’s gone. I am 50 and premenopause. My dr messaged me says I don’t have to worry about the tscore, just keep taking vitamin D.

Neeli, I had period the first chemo, then it stopped, my blood test still shows that I am not completely in menopause, so my dr put me on tamoxifen

Jkeet, I did need Neulasta during chemo. My insurance won’t pay for it at the beginning since it says only 15% people need it. I have to prove that I need it first. 10 days after the first chemo, My WBC dropped to 1.7 and started low fever which was scary, then insurance approved it.

Shelabela ... good to hear from you again. Sorry about the other problems and it reads like you are on top of this despite the rounds of doctors and tests upcoming. Did you try Zofran with the iron pills? BTW, I coughed thru Herceptin and have never stopped. I am happy you are still please with your recon results!

Flnana & Jkeet ... welcome to the place you never wanted to be. Make the most of your cancer journey. If you want, you will learn a lot about yourself, life, and what matters. Reread ToniLee's opening remarks to this forum. Always remember it is YOUR body and YOUR life. Long after the medical people are gone, you will be left with the results. Get what you want. Saying "no" and saying "stop" are always options. I worked thru it all. Missed an out of town training on day 1 and day 2. Day 1 I was in chemo. Day 2 I flew to the training to join the rest of the team. I learned I was stronger than I thought.

Boogirl ... great about your hair and LilyCh great about your results and the fight your partner made!

Bheg79 ... give your port healing some time. If you are really worried, get it looked at.

Wheatscapes ... I don't know about "shine." When I wanted to stop my first AI, my MO said, "if you stop you won't be cured." He changed my AI, LOL.

PrincessM ... Your plan reads well thought out. It is YOUR quality of life!

Have a great week everyone!

Love, Vicky

Hi Everyone, Its nice to pop in and see some familiar 'faces' every once in a while. Its comforting.
Shelabela - sorry to hear you might have auto immune issues - I have them and unfortunately chemo made mine go in full flare up mode.
Welcome (sorry you have to be here) Jkeet & Tinaziller. Just remember - Everyone reacts differently thru this journey.

Tinaziller I can relate - I'm 61 and have tried Arimidex and Tamoxifen with horrible SE's. Stopped, and having a difficult time trying to talk myself into going back on Tamoxifen. will start with 5mg every other day ….. one of these days.

Take care

For those experiencing side effects on assorted aromatase inhibitor drugs, you might find that switching manufacturers of the same generic, switching to the name brand, or switching to a different drug can alleviate some side effects. Generally, finding the fewest additives and fillers works the best, but that is not universal. Here is a tool, previously posted by coachvicky, for determining which manufacturersadd what, and also a link for the name brand Arimidex, not paid for through insurance, but rather supplied directly, for $30 per month.

https://dailymed.nlm.nih.gov/dailymed/index.cfm

https://www.eaglepharmacy.com/drug/arimidex

WC3, would it replace Kadcyla? My surgery is tentatively scheduled for 8/8 and MO is talking about Kadcyla if there is any live cells left.

WC3 where is the link? I don’t see it.

SoecialK I didn’t even think about switching manufacturers, I complained to my MO and he was more than happy to stop the lupron and letrozole. Been flying solo for almost two weeks now. To start tamoxifen next Monday.

dawn - it is unlikely your oncologist would endorse replacement of an approved drug like Kadcyla with a clinical trial vaccine, which you would probably have to travel to get, and which is not yet on the market with FDA approval.

dawn - exactly on the Kadcyla - have to go with the proven drug, the vaccines are still unproven and in the experimental stage. I participated in a Her2+ vaccine trial (GP2/GM-CSF) from 2012-2017 that followed the same protocol as most of the current ones, 6 months of monthly injections, then boosters for two years, then followed for two more. A number of these trials have shown great promise, including the one I was involved with, but unfortunately none of these drugs has come to the market yet. I think this will be yet another tool in the arsenal for Her2+ patients but we are not there yet.

Of course the goal is to stretch out the MO appointments, but I get it on feeling funny about it - I love that I still see mine even though I was diagnosed almost 9 years ago (supposed to be annually, but I can’t seem to “graduate” to that yet!), many are seen in survivorship clinics at the five year point, or handed off to their primary care doc, but mine sees me and does labs. I am happy with that arrangement.