TRIPLE POSITIVE GROUP
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suburbs,
Everything is approved and now getting appts scheduled. I feel like I am reliving 2017.
Angelsgal
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Morrigan
My dr took me off the Hormone blockers when I did the second round of Kadcyla to knock out some cellular activity. It didnt work so I have metastisized cells in multiple sites all over. Will be going on EnHertu as soon as all the tests are finished (Echo for heart, 2 MRI's to prep for two separate sets of 5 rad treatments. Will be losing my hair again and it feels like I am in a dejavu of 2017. Thanks for asking. I am not looking forward to this but the sooner I start the sooner its over and we view the results. Case studies on this new therapy are very positive.
AngelsGal
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SpecialK
I am going on ENHERTU. has real promise. Just became available 3 months ago.
AngelsGal
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wahoomama87 thanks for checking in. I will need. Chemo. I have my echo tomorrow and should have a plan this week.
Right now, they are talking about taxol and herceptin- and another drug, not sure yet. I was really hoping that the double mastectomy was going to be enough, but alas 2020 is just the year from hell. I am finally feeling better from surgery, less sore, more mobile. More info to come!
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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
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suburbs - Hi!!! Good to "see" you!
angels - ah, Enhertu, interesting drug, and carries less possibility for development of resistance. I hope it does the job for you!
kimm - have you tried the brand name of Arimidex? I know coachvicky also struggled but was able to tolerate the brand name. If your insurance won't cover it (because there are generics available...that you don't tolerate, smh.. I wish insurance companies were not so rigid with this issue) there is a direct mail source that is very reasonably priced called Eagle Pharmacy. They don't go through insurance, kind of like GoodRx, and the cost is $60 per month. Might be worth a try. I am interested in the recommendation for Faslodex, but wondering if your insurance may balk at the cost - it is considerably more expensive than regular anti-hormonals, and you are considered an early stager, so you might have an uphill battle, but hopefully not. Sounds like your MO knows how to handle that since he has had others who have successfully switched. Some meds also have programs if insurance won't cover, or cover fully enough. I have a friend locally who has been on Faslodex since recurrence with lung mets (she is not Her2+) and she has tolerated it very well and it has worked for her keeping her stable. Be aware though, that there is now a generic formulation of Faslodex too - that could be why your MO has been able to get insurance approval. We share an oncologist and he went to bat with the practice for her to get the name brand since it had provided such successful first-line treatment for her and her insurance was willing to continue covering the name brand. Let us know how this goes - there may be others who have the same difficulty you do and this may be an option for them too!
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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.
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i have seen people on my Facebook Support groups say that taking a break from AIs and, restarting them helped kick the SEs. Hopefully your plan to slowly add the drug back to your system helps.
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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:
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morrigan_2575 thank you, I hope it helps as well.
SpecialK - so sorry for your struggles... I also have severe degenerative disc disease in my thoracic spine that I was supposed to have microendoscopic something done last year, but my BCB (breast cancer bitch) took prioity, I had 2 level cervical artifical disc replacement in 2017, and I am receiving injections in my shoulders for rotator cuff tear and frozen shoulder... fun times ... thank you for the link, lol, I have been looking all morning for ingredients so I could compare the fillers.
More researching I go.
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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.
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Hi, GG2020, I just wanted to weigh in since it looks as though you haven’t gotten a response on the forum. Prior to it being determined that I had a positive lymph node, my team was still recommending TCHP treatment (it just would have been post-surgery rather than pre-surgery). My understanding is that TCHP is the gold-standard treatment for triple-positive (or any form of Her2+) IDC. Others on the board certainly have more knowledge and experience than I do, but my instinct is to suggest that you ask your team about the TCHP regimen specificallyand why it isn’t being recommended, and that if you do not feel confident in the answers you receive, that you ask for a second opinion.
It sounds like you have a very good prognosis! I’m so glad! Best of luck to you!
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Hi All,
Starting ENHERTU on Thursday. Will keep you all posted on how it goes. Has anyone else gone on this Infusion Therapy?
AngelsGal
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GG2020, I think it is extremely important that you get a second opinion as soon as you can. Triple positive is aggressive and fortunately we have very good treatment protocols but if they weren't being used, I would want extremely detailed information from someone other than your oncologist. Hope this helps.
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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!
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Hello! Sorry for the delay- I was waiting on my chemo cocktail. Will be starting Taxol and Herception for 12 weeks/ then herceptin every 3 weeks for a year (through the port). I should find out tomorrow about the port/ then the start date. I am planning on cold capping.
I am ready for all of this to be behind me!
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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.
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GG2020 - has 12 weeks of Taxol and Herceptin been discussed as a possibility? This is usually done adjuvently, for those with smaller node negative tumors. TCHP is usually used for tumors that are either 2cm or larger - specifically the addition of Perjeta - or any size and node positive. Here is some info on the study results for Stage 1 breast cancer.Also included is the seven year follow up info. There are quite a few who post on this thread who have done the Taxol/Herceptin regimen.
https://www.nejm.org/doi/full/10.1056/nejmoa1406281
https://pubmed.ncbi.nlm.nih.gov/30939096/
Edited to add: I strongly advise a second opinion if you are being advised that some form of chemo and Herceptin, at a minimum, is not necessary. Anti-hormonal therapy does nothing to address the Her2 aspect of your tumor, and it is the more aggressive and potentially dangerous aspect. I have been on this forum for 10 years and have never seen anyone with a Her2+ tumor not be advised to receive systemic therapy.
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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!!!
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GG2020 - here is an article I found that is relevant to your situation:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC30085...
It says women identified as low risk Her2+ by Mammaprint had a 10 year DFS of 89% with no chemo, and most of those women also didn't have tamoxifen either. Small sample sizes though. Maybe a compromise would be just Herceptin + endocrine therapy? Good luck with your decision making. Sometimes I'm glad my cancer was so bad that I didn't really have to think much about things (I took it all! If the cancer comes back I can at least tell myself I literally did everything I could). If you decide to do chemo, just know that it is nothing like what people think it is. I thought chemo was not that big of a deal, tbh.
Edited to add: I skipped my last zoladex and we are monitoring estrogen levels to see if I'm in menopause. So far so good, and I hope it stays that way! I'm pleased as punch to not be facing that huge needle!
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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
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Coach Vicky- Does the Adderall help with the PTSD or the focus part? I find my focus has been greatly affected since chemo ;-(
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beingpresent - coachvicky has not signed on to this site since July so she may not see your message. FWIW my daughter has ADD and has taken Adderall as an adult, which is definitely a focus drug for those with that diagnosis, and others with metastatic disease do take it to help with fatigue. Adderall is amphetamine salts, a stimulant, if you read the contraindications and potential side effects it could actually make PTSD worse. Not saying that is universal, but I would advise using it under the guidance of a provider with a specialty in this type of medication.
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I'm not sure if this is the place to post this but I am 3 years out from chemo, radiation, lumpectomy and am feeling new pain on left side of body on ribs. Sore to touch feels lumpy. Could just be scar tissue but it just feels different. Anyway, I have a breast MRI coming up next month that I am trying to move up sooner - Will a breast MRI detect anything in your side on ribs or should I be going to get a different scan or ultrasound for that area? thanks!
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emily - who ordered the MRI? Were you able to let the ordering physician know about the discomfort you are having in that area? Has the area been examined by the ordering physician? Is there an instruction to the imaging center to make sure to include that area, if possible, in the breast MRI? It is possible that your ribs on that side may be included in the regular field of view in the breast MRI, but I feel it would be a good idea if the imaging center is notified ahead of time to please concentrate there in addition to the breast, if at all possible. Additional imaging for bone is usually a nuclear bone scan or PET/CT, and could be utilized if something is spotted during the breast MRI, or if the pain persists and nothing shows on the MRI.
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thank you for your response, Specialk. The mri is just my routine every year breast mri that I still get. I did call the office and they asked me to come in Thursday to take a look at the area. Not sure what they will do yet but I'm glad I'm going in before the regularly scheduled visit.
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Hello. I signed up a few days ago and am completely unsure about any of this. My adoptive mom has been diagnosed with triple positive. It was bit of a shock since we expected estrogen positive due to Long term HRT use and her age (82)
She saw the surgeon before the markers were identified. Her cancer is 4.9 cm in her right breast just under the nipple and he can’t save that. She also has a 1.1 cm lymph node that showed on the ultrasound and the biopsy confirmed it’s also cancer.
At the surgery appointment, he said she would not get chemo just radiation. Again, this was before the triple positive was identified. He said they don’t use chemo on people over 80 and he is confident he can get all the tumor. Does anyone have any experience with triple positive in this age group? Everything I’ve read said chemo for this cancer and this was just the surgeon, she hasn’t seen an oncologist and won’t before surgery. She has a PET on in a couple weeks, 2 days before her surgery
Despite her age, she has nothing else wrong with her. Her only medication is thyroid hormones for hypothyroid.
Any help would be appreciated. Thanks!!
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Exactly, don't listen to the surgeon when it comes to oncology and, make sure she advocates for herself.
My friend's mom was just diagnosed with Triple Negative BC at 79, she got AC+Taxol and Radiation. I find it hard to believe that 79 vs 80 would make such a huge difference in treatment.
I do understand that there is a trade off that your mom might not want to deal with Chemo at her age but, if she's healthy and feels strong enough I don't see why she couldn't try it. If nothing else I would think a year of Herceptin/Perjeta for targets therapy
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I agree that this is the oncologist's call, not the surgeon. And it's your mother's! Now that you know her positivity status, see if you can move up the MO appointment so you have some additional clarity about a plan. You're right. Standard treatment for TP includes chemo. The chemo regimen is determined by tumor size and characteristics but I think we've all had chemo. A lot of women are now getting chemo pre-surgery. There is.a term for it but I am too old to remember!
I'm certain there is at least one person on this thread who was over 80 at diagnosis but can't remember who. Hope she chimes in. There is also a thread for "older women" - it's a small group but we are pretty chatty.
Most of us are surprised by a cancer diagnosis and it is an extremely stressful time. Covid hasn't helped as you may not be able to accompany her to appointments. Since most offices are now set up to Zoom consultations, she may want to inquire whether you can join her that way. I know DH always had lots of questions that I didn't think of when he wasn't with me.
Questions are always welcome here so come back often.
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I have finished 9 Taxol treatments. MO thought we needed to stop due to my side effects. I have had 4 Kanjinti infusions and will continue every 3 weeks until September 2021. What side effects should I expect? Also will start anastrozole pill. Anyone on these drugs
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