TRIPLE POSITIVE GROUP
Comments
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LaughingGull...I did read your reply...thank you. That actually helped alot but what I am uncomfortable with is the wording "suspicious for..." And wondering if I can have them look again or if it would be worth a full request for a second opinion.
Just like in a crime, I can have a suspect but I need evidence to convict. I am trying to process how to discuss treatment when there is no conclusive evidence.
Lymph node was clear so I am comfortable thinking it is not necessarily spreading via lymphatic system. But vascular system, in my research, can be confirmed through small venous examination. I even pulled my mom's pathology report from 13 years ago and it listed evidence positive for lympathic and negative for vasuclar as 2 separate, distinct line items.
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rlmessy,
You were diagnosed with triple positive breast cancer, so regardless of whether or not you have lymphovascular invasion, your treatment plan will probably be pretty aggressive.
Has your medical oncologist suggested treatment options for you?
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ElaineTherese...I understand Triple Positive. My mom is a 13 year triple positive surviver from Stage IIIa.
I opted for surgery first and have a pre-surgical oncology plan that will be finalized based on the final pathology.
My options to treatment will be the level of chemo that I do and that is where the question comes in. Weekly taxol was an option before final pathology. Chemo can have wide ranges with varying toxicity. I would like to address the chemo side with as little toxicity as I possibly can.
There is no question of other treatment options...Herceotin, anti-hormones, etc...
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rlmessy,
If you want to do weekly Taxol as opposed to TCHP or AC + THP, I expect that won't be a problem. Your tumor is a little larger than those who usually do weekly Taxol, but if that's what you want, I expect that's what you'll get.
There's no sense in worrying about whether or not you had or didn't have lymphovascular invasion. None of us will really *know* whether we have had enough treatment unless there is a recurrence. (Of course, it does feel good to get a PCR after neoadjuvant chemo, but even that's no guarantee.)
There are no certainties with life or cancer. Sometimes, we have to just accept that there are things we cannot control and move on. ((Hugs))
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ElaineTherese...and there is the lesson of the day, week, month, year for me...that "there are no certainties in life or cancer." As is blatanly obvious I am a pretty black/white person that does not function well in the grey. If there are lessons to be learned from this sucky disease that will be the one for me.
Thanks for the gentle reminder!❤️😊
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rlmessy, the question is, would that small venous examination, and whatever information can come out of that change the course of treatment? If the answer is no, they will not pursue it, because it would not be worth pursuing. Lymph node involvement for sure would change the course of treatment, so that is a different story.
Happy New Year to all!
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Hi,
I am 3 months off chemo. I am still on kadcyla. I was spotting for a week now and its turned into bleeding now. My gynecologist appointment is not until next thursday. Did anyone have any bleeding issues couple of months after chemo?
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Hi Neeli - I did this past week - like a light period - I left a message with my onc - he must be off for the holidays as he hasn't responded yet - I'll keep you posted - are you on Tamoxifen? or an AI? If you're pre-menopausal like me, we might need to be put on ovarian suppression drugs
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FNPMom - I am pre-menopausal. I am not on tamoxifen yet, i am supposed to start it after i finish radiation in 2 weeks. It does look like ovarian suppression is needed as well. Keep me posted.
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I’m premenopausal too- getting ovaries & tubes out then going on AI two weeks later. We can take tamoxifen without being put in menopause but for the AI we need ovarian suppression. I’m not looking forward to sudden menopause or the AI. Started Kadcyla thurs. just gotta keep on truckin
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Lulu44, I just wanted to chime in about ovaries removal and AI. Your diagnosis and mine are similar. I was pre-menopausal when diagnosed, and I also had ovaries (and tubes) removed, and started AI nine months after diagnosis. I was 47 at diagnosis, and 48 when I had my ovaries removed and started AI. I am a year and a half out now. I am doing great. I am very active, have minimal pains and aches, hot flashes are not significant, I am in great spirits (weaned off antidepressants many months ago), didn't gain weight and I look great. My most serious side effect form the AI, and it is a very annoying one, is vaginal dryness, which interferes with good sex, but doesn't preclude it.
I used to have ovarian pain and cysts, and after the ovarian removal they found a bit of endometriosis (which explained the ovarian pain); I also had an episode of thickening of the endometrium and vaginal bleeding the year before the breast cancer, and I was having my period every three weeks -these are normal peri-menopause things. All in all, I am very happy I got my ovaries removed, I am done with periods, done with ovarian pains and bleeding, done with the monthly hormonal-emotional roller coaster. Not sure how old you are, but trust me, natural menopause and peri-menopause are no picnic. Keeping your ovaries wont keep you young into your 50s, you will still go through menopause, there is no way to avoid it and it's no fun but doable.
Second-opinion doctor at MSK told me that attacking the hormonal component of my breast cancer aggressively this way (oophorectomy + AI) was a really good thing and that she would have recommended it.
Just wanted to send a positive message your way. Don't be scared of ovarian removal plus AI. You can do it!
LaughingGull
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LaughingGull thank you SO much for sharing that, I needed to hear it and appreciate it so much. I’m 44 now, got diagnosed at 43. Your period sounds like it was a nightmare, I’m happy that’s over for you. I haven’t gotten one since 9/28/19 during chemo and I’m enjoying that. One of the most annoying things I’ve gone through is shingles. I’ve had these atypical shingles on both sides of my body since August. My MO sent me to a dermatologist and she diagnosed me but didn’t do a culture. They look more like chicken pox so a couple nurses in the MO’s office don’t believe they’re shingles. I’ve been on Valtrex for “suppression,” although it hasn’t suppressed anything unfortunately. Going to get a culture tomorrow. The MO said back in August that the shingles would keep recurring throughout chemo- until about a month after. Now I’m more than a month past chemo but I started the Kadcyla. I’m hoping I don’t have to have shingles the whole time I’m on Kadcyla. I can’t find much info on whether Kadcyla causes us to be immunocompromised. Luckily they aren’t too painful, mostly just itchy with a burning sensation. Anyone else get shingles
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Lulu44...that's so interesting about your shingles. I'm through TCPH as of 11/14 but have done two doses of H & P and will be starting Kadcyla on the 16th. About 10 days ago my right forearm broke out in what look like pimples but extremely itchy. I keep long sleeves on in order not to itch them and started using a roll on aspercreme with lidacaine and I take benadryl at night just so I can sleep. Yesterday, the left side of my nose by my eye has been driving me crazy with an itchy stinging sensation. Feels like the same thing as my arm. I haven't seen my MO yet but now am thinking of going to the Dermatologist to get it checked out. I had no idea that these could cause shingles. I've been googling nerve pain (not nephropathy) and didn't come up with much. I'll keep you informed if I find out anything...please do the same!
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LaughingGull - Thank you for sharing info on ovaries thing. I am waiting to be done with radiation. I am 36 and not sure if should take ovaries out right away or try lupron shots for a while and see how it goes. I also got my period just 3 months post chemo.
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Flnana- i don’t mean to tell u what to do but I’d go to a dermatologist and have them actually test you for shingles. Mine don’t look like typical shingles and they’re on my bilateral hands, forearms, biceps, shoulders, neck and upper back. At first I thought they were bug bites but nothing would take away the burning itch. Then I had an area of redness with skin thickening on my forearm & realized it was definitely not bug bites. The derm said that it’s not a typical presentation of shingles but I was/am immunocompromised so if anyone is going to get weird presentations it would be me (us). My TCHP got delayed 3x because of low neutrophils so I know I was susceptible. I saw that Kadcyla can lower neutrophils but it’s not one of the main side effects/toxicities. I had to search under their “healthcare provider” section to find it mentioned. I wish I had been vaccinated before chemo
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I had both ovaries and uterus taken out at 37 for a non-cancerous issue. Never been sorry. My sister bled until she was almost 60! In those days we took premarine - don't think they do that any more.
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Taco1946 - what was premarin for? how many years has it been since your ovaries and uterus are out.
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Well, had the "next step" appointment with oncologist today and treatment will be weekly Taxol and Herceptin. I actually did end up having an option between the weekly Taxol and the TC-H. I opted for the weekly Taxol and feel pretty good about it from the trial the oncologist mentioned I am a good candidate for this protocol. I get my port next week and start the last week in January. Not surprising, I am figuring out that I frenzy up to the decision-making appointments and then once the decision is made I am at peace. I just need to figure out how not to do the frenzy part and drive everyone crazy.
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Keep in mind a lot of people do chemo (especially Taxol) without a port. My MO said she'd prefer I try it without one (which was my preference anyway)--it's another surgery, another scar, another reminder. IVs were fine for me.
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On the flip side, I love my port, hardly notice it's even there. They give you this cream that numbs it and you really don't feel it when they access it. For me, I get blood draws and treatment every three weeks until it doesn't work anymore, so a port was a definite.
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I'm with BigPeaches. I was very glad to have the port. And I can't find the scar from the incision. Some doctors will do the incision between what would be the straps of your bathing suit if you are worried about that. I'm glad they are giving you a little time between port insertion and start of chemo however.
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I was very glad to have my port, never gave me any trouble, most of the time forgot I even had it. Was very convenient and saved time looking for a vein. In fact, I finished my Herceptin in May 2018 and still have my port. I go in every 4-6 weeks for a flush. Dr said I can have it taken it out anytime, maybe being overly cautious, but think I will keep for a while. My infusion center has a women who has had hers for over 10 years.
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BJI - I was superstitious about getting mine out too but MO said she was confident enough that I won't need it that I had it taken out after the first mammogram after I finished the Herceptin. Our diagnosis and treatment look very similar other than I switched to femora.
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Hello All! I am new to the group, but not exactly new to the idea of cancer. Five and a half yrs. ago, I was diagnosed with uterine CA and had a total hysterectomy. Luckily, it had not spread outside the uterine wall, so I did not need to have any chemo or radiation.
Fast forward to this past April, 2019. I had my annual mammogram and my whole world changed. I was in shock because I never thought I would have to experience the "C" word again. Two biopsies, an MRI, and 2 surgical opinions later, I had my lumpectomy on July 25, 2019. I, too, was triple positive; so even though the lump was small in size (9mm) I still had to have the chemotherapy and radiation because of the aggressiveness of the HER2. I am also continuing Herceptin for the rest of the specified 12-month period. I completed my 12 weeks of chemo on 11-8-19, and the 5 targeted radiation treatments on 12-4-19. Needless to say, it was kind of an "off" year this Christmas, but I am very grateful to be alive. If not for the excellent care I received and for the Grace of God, I'm not sure I would have been so fortunate.
After nearly 4 months off on disability/FMLA, I came back to work on 12-18-19.
It is so good to read of all of your experiences, and if I can ever be of assistance to you or share what I know (which is not a lot!), please feel free to reach out in this chat. Does anyone know if there is an app for this site that I could download on my phone?
The one thing I would like to know is whether anyone has had any luck treating peripheral neuropathy. I play guitar, but I have not been able to feel the strings due to numbness in my fingertips. Both of my feet are also affected, and they get swollen and feel cold all the time. I also have no balance, due to the numbness/tingling in my feet. My Dr. recommended Glutamine, but so far I have not had much change. I would love to know your experiences/ideas. To me, this is the worst side affect of all because it's still with me.
Dx 5/13/2019, Invasive Carcinoma, Right, Grade 3, 9 mm, ER+/PR+, HER2+
Targeted Therapy 8/16/2019 Herceptin
Chemotherapy 8/16/19 Taxol
Surgery 7/25/19 Lumpetomy: Right
Radiation Therapy - Targeted R breast, 5 treatments
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Hi all - was on a little hiatus - my December was crazy busy with some travel, guests, finding a new car, and a house purchase.
On the shingles vaccination - difficult decision on when to get it because I believe it can only be given once, and doesn't have that much longevity. It is recommended to be given after 50 as risk goes up with age.
neeli - Premarin is hormone replacement therapy (HRT) given to alleviate post-menopausal symptoms. It has been linked to increased risk for breast, endometrial and uterine cancer.
rlmessy - glad you have a plan, and know you are totally normal in regards to the freak out prior to plan response. I am thinking that your oncologist was citing the trial done at Dana Farber on Taxol/Herceptin for early stage Her2+ tumors. Here is a link, and another that contains the good news follow up at 7 years:
https://www.ncbi.nlm.nih.gov/pubmed/30939096
I had my port for 6 years, had it flushed regularly, and finally had it removed during another surgery a couple of years ago. I never minded it - my breast surgeon put it in during mastectomy so I had no external incision, and I was a little superstitious about removing it, but my oncologist felt it was time.
dajoway - I used L-Glutamine, Vitamin B6 (standard dose) and Acetyl L-Carnitine (standard dose) during chemo for neuropathy prevention, and actually just came across an article that indicated Vitamin E can also help. How much L-Glutamine are you using? I took the powdered formulation - 30g, in three 10g doses dissolved in something cold and as non-acidic as possible.
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specialK, thanks for your input on the L-Glutamine and other supplements. I have the powdered Glutamine, too, but each scoop is only 5mg. I’ve been trying to mix it in water and drink a 16 oz. glass 3 times a day. I say “trying” because I got nauseous and didn’t want to put anything else in my stomach. I have not heard of Acetyl L-Carnitine, but I will look into it. Did these things, along with the Vitamin B6, help reduce or prevent neuropathy for you?
Thanks !
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dajoway - because I began the supplements at the start of chemo I will never know what would have happened without them, but I did experience neuropathy in my fingertips, bottoms of my feet, and weirdly, my tongue/mouth from the outset. For the first three infusions ( I had six TCH) the neuropathy resolved in the three weeks prior to the next infusion, but from the mid-point on, it did not. I did continue taking supplements after finishing the chemo portion of treatment, continuing while on Herceptin only. About 90 days PFC the neuropathy dissipated, and I now have none. The only residual effect I have is not being able to wear high heels for too long before the soles of my feet become achy, but that may be a function of age as well. I also iced hands and feet during the Taxotere portion, but I was focused on icing the nails rather than whole hand or foot. At the time I received treatment there was more discussion of prevention nail loss than prevention of neuropathy, but I may have inadvertently benefitted from icing.
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dajoway - I tried accupuncture for my neuropathy (it was in my feet and I'm a trail runner, so kind of a big deal for me, and mild in my hands as well) but I don't think it did anything. People swear by it though, and it wasn't as woo-woo as I originally thought. Once they inserted the needles, they hooked then up to some electrostimulation, which was weird and unpleasant but was meant to stimulate the neural pathways so your body doesn't think they're dead, I guess? I don't know what literature is out there on it but my insurance paid and I figured it wouldn't hurt and might help so why not? I also took B6 and B12 and ate some extra protein. My neuropathy resolved with time -- and exercise. It really started getting better when I started running more, so maybe try to fumble your way through some strumming? Or maybe some piano if you have a keyboard. Get the muscles moving and blood flowing. I think that's what helped me the most.
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Hello all,
I thought I’d post about Kanjinti since I haven’t seen much on here about it. It’s the new bio similar that can replace Herceptin. I was switched and the first to use it at my treatment center.
After 4 months of Taxol/ Herceptin, I’m now GettingKanjinti every 3 weeks.
So far SE are some body aches/ joint pain the first few days and fatigue. Like I was at half energy. But Each day I got more energy. What’s frustrating is I still never get to 100% energy. I still feel like I can only get to 70% energy, but That is so much more energy than I had when on chemo.
I guess it will be like this until I’m done with treatment??
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New Cancer Survival Rate Web Site: https://cancersurvivalrates.com/?type=colon&role=patient
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