TRIPLE POSITIVE GROUP

Thanks for the encouraging words. The PET scan last Friday showed along with the Kadcyla not being effective the second time around that I have a fractured femur which is considered a hip fracture. I have been walking in pain on it for 2 months thinking it was a pulled psoas muscle and the PET scan showed a fracture.

There is no official treatment for it but rest and at this point the pain has decreased significantly so it is healing on its own. The injury occured the end of July when we were on a mini trip for our 23 anniversary and I stepped of a curb wrong. I was also dealing with Plantar Faciatis in my foot and though I didnt fall I did catch myself wrong which started the leg pain along with my arch/heel pain. I have been a mess ever since.

I am going crazy waiting for the approvals to go through on the treatment and radiation that is now needed. I want to start NOW and get these cells taken care of before they can team up and create a mass or tumor somewhere.

Prayers appreciated my faithful battlemaids!

Angelsgal

Eucalyptia -

Just chiming in with what others have said - you can get through this. I have 5 kids - two still at home and one in college nearby, so he's home a lot also. I was diagnosed in March, started chemo in April, finished that in July and had a BMX, no recon in August. I'm 6 weeks post surgery as of yesterday, and mostly feeling pretty normal now. Because the standard chemo for TPBC is every 3 weeks, it actually allowed me to bounce back between treatments. The 3rd week, I always felt mostly normal. I did a lot of things to support my body through all of it - including working with a naturopath on supplements and diet to get me through. It all worked, and I had minimal, manageable side effects. The fatigue the first week was the hardest, but even with that I was able to keep working (from home) and taking care of my family. My husband and the kids were huge helps also. I know you have a little one, but hopefully you've got friends and family that can pitch in where needed. I don't have extended family close, but our community of friends has been awesome through all of this. As lots of people have said, that targeted treatment for our kind of cancer is a miracle. It truly is. TCHP destroyed over 99% of my cancer before surgery, and surgery got the rest. I'm currently NED. Even though I wasn't 100% after surgery, I had so little left that they considered it 100% and I did not get switched to Kadcyla. Although there is always a risk of recurrence, my prognosis is very good and I'm holding onto that and doing everything I need to do to help my body keep this cancer away. This community is so knowledgeable and helpful - definitely keep asking questions!

Kris

Thank you so much.

I go to the oncologist today (for the first time) and I am legitimately freaking out. I'm exactly 2 weeks post DMX. I am still so sore and dealing with the "healing". Emotions are all over the place. My lymph nodes were clear, which is great, but the triple positive diagnosis is less than. My doctors were smart in that they've told me I should wait to review the complete pathology with the oncologist (vs just giving me the results and allowing me to consult dr. google) so I am going into this pretty blind.

Yesterday was not a great day pain wise - today does feel better. My diagnosis to surgery timeline was FAST so I feel generally unprepared for EVERYTHING. I didn't have time to think, research, process etc. I am only now catching up on what is considered "normal" in post surgery healing (which is pretty across the board...i know, everyone has a different experience), but I just sort of feel a bit lost.

Hi everyone. It’s been a long time since I have followed the board regularly. Today, I have been feeling grateful remembering that I am getting close to the 4 year mark since diagnosis. And moreover thankful for all the support I received here. I will have to catch up on the latest.

angelsgal57, sending virtual hugs and hoping that your treatment gets approved and you are on a path to recovery.

Insomnia always reminds me of those months of steroids staying up late to research.

Suburb

suburbs,

Everything is approved and now getting appts scheduled. I feel like I am reliving 2017.

Angelsgal

SpecialK

I am going on ENHERTU. has real promise. Just became available 3 months ago.

AngelsGal

specialK or anyone else...

I am having a hard time with all 3 aromatase inhibitors I have tired and their debilitating side effects .. I finished my 1 year Herceptin Sept 18, 2020.

At my follow up today with ONC, he mentioned that there is another option...

Faslodex shot 1x a month for 1-2 years, even though I am not matastatic. He has had others switch with no problems ... but Faslodex 1x month shot for up to 2 years vs a pill every day for 7-10 years ... no brainer, I would think?

I am just starting my research, but I was wondering your take on this.

Thank you all in advance. ~Kim

thank you SpecialK

I started with Anastrozole, then Aromasin, and then/now name brand Arimidex .. all same debilitating side effects, he does not recommend Letrozole ... I took 4 weeks off and finally very little bone/joint/hot flashes pain ... even my hot flashes cause my while body to hurt, grrr .... so I am restarting today with 1/2 a pill every other day for 4 weeks, then whole pill every other day for 2 weeks, then hopefully 1x pill daily, we will see... I do not have a prolem with insurance and name brands, as I have always had issues with generics and it has been flagged in my Insurance Record ... I must try generic, but then there usually is no issues going to name brand...

I am still searching and reading and looking for people who are not metastatic and on Faslodex ... It seems when all new medication are developed, they all start out for Stage 4/metastatic people and then trickle down to early stagers.

Thanks again for your input.

kimm - glad your insurance cooperates, that is a great bonus. Even with a peer to peer review from the MO and documented reactions some insurance is not moveable - which is a pain. I too am sensitive to many drugs, particularly antibiotics. I am also allergic to albumin based vaccines and neomycin, which is a part of a number of vaccine formulations - complicates both flu shots for me, and possibly any forthcoming Covid-19 vaccine. Violently allergic to adhesives - makes bandaging post-surgically a challenge - my PS had to get creative! You are right about the meds going from mets patients and then after time, down to earlier stages. This was true for Herceptin/Perjeta/Kadcyla too, and it is because that is the FDA approval design. Trials often start with metastatic patients, and if success is noted over a period of time, new trials or studies build upon that success to see if benefit is provided to earlier staged patients. I had some difficulty with anti-hormonals as well. I started with generic Femara from Mylan and after six months my thumbs were locked with triggers. I already had pretty wicked hot flashes due to total hyst/ooph done when I was 45 and firmly pre-menopausal. I also had joint pain and general body aches from lumbar degeneration and typical age-related arthritis. My MO switched me to generic Arimidex from Accord, triggers resolved. I stayed on that med for 18 months, then had an issue with an inappropriate level of inflammation to a minor knee injury which ultimately required a steroid injection into the joint. I switched back to generic Femara since that is the drug my MO favors for HEr2+ patients, this time I requested the generic from Roxane Labs because it had less fillers and additives than even the brand name had - these inactive ingredients often are the culprits for the lack of tolerance in some people. I did great on that maker, but then they merged with Westward Pharm and stopped making letrozole. I actually called them to see if they would restart at some point, but they did not. I did continue, I believe also an Accord maker until finally stopping at the 7.5 year point. Interestingly, most of my side effects did not resolve after stopping, I have only slightly less joint pain/aching and I have been off these meds for 2.5 years now

Here is a link to the NIH tool that allows you to see the active/inactives in each brand so one can search what is in each maker:

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

Hi everyone,

Back on here now that surgery is done (DMX 9/11/2020 - healing well and doing good, 0/3 nodes - very happy!) and was back today to discuss treatments with my MO. I was a bit surprised today to be told that they are considering recommending de-escalation to only Tamoxifen, no Herceptin/Taxol regime as I expected from our earlier discussions after surgery pathology was reviewed. I was already aware that my Mammaprint (Low-Risk/HER2-type) made me a lean benefit candidate for chemo, but just the suggestion of only tamoxifen seemed odd to me. I didn't think I could be this stressed about being told good news of “you probably don't need chemo" but here I am with a hundred new questions in my head. LOL!

Anyone else with early stage Triple positive have this level of a de-escalated treatment plan? I'm 52, no family history, overall very healthy minus this little hiccup in my path, and “very very close" to menopause so says my bloodwork.

It stinks we all have to be here, but just reading all your posts & words of encouragement since my diagnosis has been so very helpful - so I'm glad you're all willing to share.

Hi All,

Starting ENHERTU on Thursday. Will keep you all posted on how it goes. Has anyone else gone on this Infusion Therapy?

AngelsGal

AnnaTheBrave, thank you for the reply! I should probably clarify that the TCHP is still on the table of my options, they’re giving me choices to consider.

Agree with you that the TCHP is the current gold standard for any HER2 type, and I’m still thinking the TCHP is the best choice unless they can demonstrate a solid reason why a plan, like just Tamoxifen & observation, would be OK for my tumor type. My Ki-67 on the surgical pathology report was only an 8 and my HER2 and Estrogen were in the 90s with HER2 winning out by about 6 points or so. I think this large contrast may have something to do with that, at least that has been inferred as to why they’re not sure if TCHP might be over treating me to no extra benefit. So.Many.Questions.

Appreciate you responding. Sending you well wishes and luck on your journey!

Eucalyptia I started Taxol and kanjinti 9/1/20. I thought 12 weeks is so long but I now only have 4 more to go. I didn’t ice cap since I already had some alopecia but I have been holding ice bottles to prevent neuropathy. So far no neuropathy. My SE have been diarrhea controlled by Imodium, bad face and arm rash which is slowly getting better and of course hair loss. I also am looking forward to getting this year behind me. Join October chemo group. They are encouraging and helpful. I am in September chemo and Taxol groups.

Hi SpecialK,

Yes, that 12-weeks of Taxol + Herceptin, then 9 months of Herceptin, was the adjuvant treatment plan shared with me first thing after my biopsy diagnosis in July so it’s always been What I figured was going to happen. (realize I mistyped that with TCHP in my earlier note)

All you shared here was / is why I was a bit mind-boggled over the mention of the Tamoxifen only as an option at my last appointment.

She’s definitely not saying that the Tamoxifen is her recommendation, Just one options. Will say that she is far wiser than the oncologist I saw last year, and is also in process of consulting with Dana Farber on my treatment options because my tumor is apparently somewhat unique (or understudied at least) because it’s categorized at Low Risk + HER2+ per the Mammaprint result. ?? I think this has something to do with me being a potential candidate for a “de-escalation” of treatment. Or I may just be confused.

I have my next appt in a week and really want to get this train moving. Starting to feel like it’s starting to take too long, though I’m grateful for the D-F consult she’s securing. I am already just a few days shy of 5 weeks post surgery!

Appreciate your share and really grateful for the reboot to follow what my gut keeps telling me - that the HER2 is my biggest factor to consider. Thank you!!!

GG2020 - Treatment protocols have changed since my diagnosis 4 years ago, but you are the first 5P I have heard speak of no chemo. With a small tumor and no lymph node involvement, I would guess you should be getting Taxol and Herceptin. That's what Eculypus is getting. Not fun but doable. Herceptin has been a game changer. I agree that you should seek a second opinion. The Tamoxifin will deal with your hormone positive cancer but not the protein fed tissues (the third P). If you are post menopausal, you would get an AI instead of the Tamoxfin.

If you do get chemo, definitely join a board for "starting chemo on ____). My group even set up a private Facebook account. Was a great help to all of us. We still check in periodically.

Stay close.

Taco