TRIPLE POSITIVE GROUP

hapa

rjles - ok, well that is quite a conundrum then. Have you tried any estrogenic supplements? Black cohash, soy, etc.?

also, have you seen an endocrinologist?

Annie60

rljes - bless your heart. I have hot flashes - every once in while they are so extreme that I get nauseated. But not anything like your's. Call your MO. Switch meds - also I have to take gabapentin for neuropathy pain and it helps with hot flashes. There are other meds that will help. You cannot let this ruin your life. There is help. I hope it gets better.

Annie

rlmessy

Dont know exactly where to post this so gonna stick it here in hopes someone might have a similar experience...

Has anyone stopped chemo and just received Herception and Tamoxofin?

I had a pretty bad reaction last week to my first infusion. Doctor is going to try to get Abraxane approved but if not he is going to leave it up to me to try one more time with more pre-meds but he is concerned the reaction will happen again. I guess it was worse than I thought. Plus I had tremendous back pain and am limited on pain medication that I can take without issues.

Taco1946

I stopped Taxol after 8 infusions with MOs blessings because my neuropathy had gotten VERY painful. She did say that if I had node involvement she would have pushed me harder to try to continue. Will you be able to get just Herceptin? I was under the impression that it couldn't be given without some chemo to "prime the pump." Hope I'm wrong.

ElaineTherese

AT BCO.org, there have been breast cancer patients here who have received just Herceptin and hormonal therapy. I don't know how that affects chances of recurrence, but their doctors felt it was the best path forward given their intolerance of chemo. Sorry to hear that you've had such a bad reaction to Taxol, rlmessy! Has your doctor mentioned the possibility of giving the infusion at a slower pace?

SpecialK

rlmessy - what kind of reaction did you have? Some do better with Abraxane due to the absence of the solvent present in the other taxanes, and most MOs can get it approved for their patients who experience difficulty. Here is some info regarding Herceptin only as monotherapy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5759796/

And an older look:

https://www.ncbi.nlm.nih.gov/pubmed/22015286/

rlmessy

SpecialK...it was an anaphylactic reaction. Doctor put it between a hypersensitivity and shock only because I did not completely pass out. It happened within seconds of starting the drop. It is not just that reaction but I also developed debilitating back pain when the steroids wore off and I have a super hard time with pain meds. It's kind of a one/two punch.

He is willing to let me try with more pre meds and stringing out the steriods and even reducing the dose he is just really cautious that it might happen again and it could be worse.

He is submitting to insurance company for Abraxane approval and if it is approved we will move forward with that for sure. If not, I think I will be done with the chemo and he will move me to Herceptin with Tamoxofin. He was ok with that and I was too only because I am lymph node negative, not a guarantee but better odds.

SpecialK

rlmessy - sounds like a well thought out plan, and I know an infusion reaction is scary. In light of your sensitivity and inability to get good pain relief, I would request a long infusion - preferably 90 mins - for the Herceptin. Every time.Faster infusion is allowed (30 mins) but can result in joint/bone pain.

laolson18

Hi All, so, 8 years later and my Mom is dealing with breast cancer again. This time in her left breast. She originally had it in her right breast, 1.8cm. She had a lumpectomy, chemo, radiation, herceptin, and was on the pill for almost 5 years. She just went for her annual mammogram, which came back fine, but the ultrasound discovered a nodule measuring 9x7x7 mm in her left breast. She had the biopsy and found out today it is cancerous. Do not have all of the histology, but considering how small it is, I am wondering if there is a high probability it could of already spread. She feels fine. I am basically looking for support of other two time breast cancer survivors with maybe a similar type of experience. Thanks in advance for reading my post

rljes

Hi Hapa - wouldn't taking hormone supplements be defeating the point of trying to rid ones body of Estrace which is what cancer feeds on?

hapa

rljes - they're not hormone supplements, they're phytoestrogens. I'm not sure how exactly they work but they're similar enough to estrogen to alleviate some peoples menopausal symptoms. In the case of soy, current data shows eating soy can reduce your risk of recurrence (but that's whole soy, not supplements, stuff like soy milk or tofu). Black cohosh has less data behind it, and some MOs recommend against taking it because of that, but people take it for menopausal symptoms as well; whether cancer feeds on it is unknown. I just can't imagine carrying on the way you are. If it were me I'd have to seriously consider taking something, even if it might increase my risk of recurrence. OTOH, I think most people find their hot flashes decrease with time. I don't know how long you've been dealing with this but it might improve if you just wait it out.

rlmessy

SpecialK...I did get the Herceptin today but the dosing is weird. I am scheduled for weekly taxol plus the Herceptin every week for the 12 weeks.

Today I asked for it to me extended and nurse said yes and extended to 45 mins because I am not getting the full 3 week dose I am getting a third of that for the 3 weeks. Does that make sense? I am going to try to get the mgs next week when I talk to the doctor.

Also, they gave me the pre meds benadryl, decradon and pepcid. Nurse said doctor was operating with the utmost caution due to the reaction last week.

So far just super tired today from all that plus we all got moved in the middle of treatments to internal rooms due to a tornado warning. What fun!

ElaineTherese...I thought the same that Herceptin needed to be primed so to speak but doctor was ok with stopping if I wanted to. The reaction was severe and quick. Hubby and I were talking last night that doctor seemed to really not be pushing chemo. It was almost like he was saying don't continue every way he could without coming straight out and saying it due to liability and what statistics say. I waiting to see if the Abraxane is approved before make a decision. Hubby is ok with what I chose.

---

Nikisworld

hey everyone. I just got diagnosed with a lung met after 4 years on tamoxifen. It is the same triple positive characteristic as my initial diagnosis which is a stage 2 triple positive breast cancer in 2015. Did all chemos and mastectomy as well. I’m only 30 years of age and I’m devastated. If anyone has any advise to help me through this or encouraging words, it would be very much appreciated.

LaughingGull

Hi laolson,

Sorry to hear about your mom. So her cancer seems to be a new primary. Is it also triple positive? I would say having a new cancer on the other side is rare and is likely a new cancer, because if it were a recurrence of the initial cancer it would be on the same side, or in the usual places -liver, bones, brain. And for chances of it having spread somewhere else, this the same story as with the initial cancer....they will give scans, and if it doesn't show anywhere else, they will still check the nodes when they do surgery. And it sounds like it's still small. I am guessing, though. Can you enter her history and make it public so that people can give you specific advice?

LaughingGull

laolson18

Hi LaughingGull, just confirmed it is definitely a new primary cancer. Below are the results:

IDC

ER 100%
PR 100%

Ki-67 10%
HER-2 Negative

So, if there is any good news in this cancer, is that it is slow growing and HER 2 negative this time, so not necessarily automatic chemo. Also, being it is definitely a new cancer, it is not a recurrence with a higher chance that it has spread to foreign areas. I would of thought a cancer on the other breast would be rare as well, but now that I am doing my research, I don't necessarily believe that. I think it can and does happen more often than not. Thank you for your input

AmyCinny

rljes,

Your hot flashes sound like mine. No sleep, unable to leave the house. Drugs didn't help, but acupuncture stopped the flashes entirely. It took 4-5 treatments before they stopped. The flashes would begin again about 3-4 months later, I'd go for another treatment, and again, they'd stop. I was fortunate that at the time I was able to afford the treatments since acupuncture wasn't covered by insurance. The hot flashes were caused by Tamoxifen, but even after I stopped Tamoxifen, they continued. It was as if Tamoxifen turned on a switch that couldn't be turned off.

The pattern continued for years until I went through menopause. After menopause, the acupuncture stopped working. I tried a different practioner with no luck. Thankfully, although the flashes are always with me, the intensity did decrease enough that I'm able to handle them with electric fans and NEVER going anywhere without a hand fan. Every now and then, I'll have a whopper, but not that often. The bad news is they never stopped during the night, so it's been almost 20 years since I've slept through a night.

Now I'm on Arimidex after a new primary cancer diagnosed in September 2018. I've noticed a definite uptick in the flashes, but at least for now, nothing I can't handle with fans. I still miss the nights of good sleep though.

momwriter

rlmessy,

At the hospital where I went, it was standard to have anti-allergic pre-meds before taxol. When I began taxol, my MO started me with a huge dose of Benadryl first as pre-meds. Because I didn't have a reaction, she let me reduce it over time (at my request). So hopefully the Benadryl and steroids will take care of it for you.

rljes

I agree hapa - If the hot flashes don't stop soon (its been over a year) I think QOL would be better taking estrogen again. I'll take my chances. I do have an appt with a Pain Mgmt Dr next month for an SGB injection - suppose to stop Hot Flashes. Injection in the neck area. Sounds hopeful. Saw it on the show "60 Minutes" and found it on the MAYO Clinic site.

AmyCinny - - I tried to find an acupuncturist for the hot flashes and could not find one in my area (hick town I live in) I had a hysterectomy 25 years ago, and my OBGYN said that I'll probably have Hot Flashes the rest of my life. Really looking forward to the SGB injection, although its a 50-50% chance it will work. If it doesnt' I'll start taking Estrace pills again. QOL.

rlmessy

Well, the verdict is in. It's official. No more chemo for me. Doctor agreed the taxol reaction was severe enough to reconsider benefits. I am moving forward with Herceptin/Kanjinti and Tamoxofin. Will get full dose of H tomorrow and then switch to every 3 weeks for the rest of treatment. Bad news...it looks like I will still lose my hair it started falling out I'm clumps today.

Any words of wisdom for the Herceptin/Tamoxofin phase?

rljes

Hi Rlmessy, I had Herceptin every 3 weeks for a year, and no SE's at all - except for my heart. I had to have heart eco's every month and twice I had to skip the Herceptin IV - but my heart went back to normal right away. no big deal.

Tamoxifen : I havn't started it yet. I have severe, overwhelming Hot Flashes and I am assuming Tamoxifen will make it worse.

MissouriCatLady

No side effects from Herceptin except, as rljes said, having heart echo's and I had one that was low, just waited a few weeks and it went back up. And a drippy nose!

I saw the eye doctor yesterday for dry eyes, and she did mention they have specific tests for those on tamoxifen, she said the oncologist tells you to get your eyes checked so they have a baseline to look at.

SpecialK

rlmessy - sorry about the Taxol situation and frustrating that you are discontinuing but will lose the hair - that stinks. I have no advice other than as long an infusion time as possible for the H only infusions, and I started a probiotic once chemo was done to improve the GI environment, I was one who experienced the Big D from chemo and Herceptin. I did also have the drippy nose and a low grade headache (relieved with Tylenol) toward the last couple of months of Herceptin. Compared to chemo the Herceptin only was very tolerable for me. Knowing your sensitivity it might be worth discussing pre-meds of Tylenol and Benadryl continuing on. I did not take Tamoxifen as I was post-memo, so can’t advise there

hapa

rljes - just a thought: do you have a lot of anxiety? My hot flashes increase proportionately (or possibly exponentially) with my anxiety levels. Maybe by treating one you'll be treating the other?

ARmom4

Hi all. New on this thread. Thought you ladies could give me some insight. I had my dmx last week and got results from lymph nodes today. Nodes were negative. The size of the cancer was smaller than they originally thought, just 3mm. My surgeon said I might only have to do targeted therapy. She's referring me to an MO.

I know that cancer can spread other ways, not just the nodes. I'm worried that through the surgery and biopies, there could be cancer cells in my blood. What are your thoughts on the need for chemo?

Taco1946

ARmom4 - welcome to the spot none of us want to be. Most TP ladies do get both chemo and hormone suppressor medication. What chemo you get depends on tumor size. The protocols have changed slightly since I was diagnosed 3 years ago, but I'm guessing you will get Taxol weekly (for 8-12) weeks with Herceptin and then Herceptin every 3 weeks for almost a year. The Herceptin has been a real game-changer after the discovery of the HER2 marker. Taxol is often considered "chemo lite" but especially with your age, you should expect to be urged to do it. Most pre-menapausal women take Tamoxifilin as a hormone suppressor (the ER?PR in your diagnosis) but again that's something to discuss with MO. It isn't started until chemo is finished. My MO gave me a 6 week break before starting it. Ask all the questions you need to (both here and to the MO) in order to feel comfortable with the recommendation.

If you are getting chemo, I would encourage you to join the thread here "starting chemo _____". My group started it's own private Facebook group and have stayed close for the 3 years. Wide range in age and diagnosis but we lost and gained hair and been a great support group for each other. I also joined a "taxol" group at the time. I think there is also a thread for younger women which should be helpful for you.

Stay close and remember there are no dumb questions. Someone else has already asked or worried about whatever is bothering you.

Jumpship

Quick question....I was trying to convince onco that it was time for a PET scan. I was denied. He said that it would only pick up tumors that are 1 cm or larger, and that those have 6 million cells. My question is....how long have the cells been hanging out and growing to get to that point? I have a child that is terrified of a recurrence and I'm tired of taking the AI.

SpecialK

jumpship - here is some info for you:

https://www.verywellhealth.com/breast-cancer-growth-rate-4175666

I had read/heard that the size threshold for detection by PET/CT is closer to .5cm and this info seems to back that up, but imaging is not 100% reliable - mammo failed to detect my palpable 2.6cm tumor, MRI surprisingly failed to see my largest positive node, so it is quite possible that PET could miss something smaller than 1cm in any given oatient

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5337231/

AngeeKV

I too want a PET scan, but I have not discussed it with my team yet. All of my friends and the waiting room gals have had them but it seems every one I meet is HER-negative so maybe that is why. I just finished radiation a week ago and have an appointment with both my oncologist and survivorship team on March 9th and am trying to come up with a good at guy of why it is necessary. Fortunately, so far they have done pretty much anything I have asked even if it’s just for my peace of mind, but I think this one is going to be a hard sell.

AngeeKV

I too want a PET scan, but I have not discussed it with my team yet. All of my friends and the waiting room gals have had them but it seems every one I meet is HER-negative so maybe that is why. I just finished radiation a week ago and have an appointment with both my oncologist and survivorship team on March 9th and am trying to come up with a good at guy of why it is necessary. Fortunately, so far they have done pretty much anything I have asked even if it's just for my peace of mind, but I think this one is going to be a hard sell.

LaughingGull

jumpship ,

I get your concern but the three oncologists I discussed scans with were adamant that the evidence is clear that earlier detection of metastatic cancer doesn't make a difference in survival. (I haven't looked at the evidence myself) You would get additional years of cancer treatment...the years between the time of the early scan and the time in which you would have seen symptoms flare up down the road in absence of treatment.

Do you have any symptoms like unexplained pain somewhere? If you have some unexplained persistent pain somewhere you can insist on a scan.

I have young kids and high chances of recurrence, so I understand being terrified of recurrence. I do all I can to lower my chances of recurrence and then I work on the terror part...I do meditation to handle the terror. If I learned that my kids were terrified I would stage an intervention. Living in fear is not worth it especially for them. Fear and anxiety rob you of the opportunity to enjoy the present moment.

If you get a scan and comes out clear, you can still have small metastasis not detected by the scan. You will still be in the dark, same as you are now, in the sense that you won't get a guarantee of the cancer not returning.And if it comes out showing something, it could be metastasis or a false alarm. If it's a false alarm you will scare yourself sh*tless for no reason. If it comes out showing metastasis, well, you are not going to feel better about life.

The only situation in which the scan would make sense would be the situation in which, by virtue of detecting your metastasis early, they could cure you. But there is no such thing. Metastatic breast cancer is unfortunately not curable.