TRIPLE POSITIVE GROUP
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Hello ladies. I think I've posted on this forum before but it's been a while. I am 19 weeks PFC, 15 weeks post BMX, and 2 weeks post exchange surgery. I'm doing Herceptin every 3 weeks through April I think and I just started Tamoxifen last week.
I find the Herceptin is hit or miss with SEs. Usually I feel ok but sometimes it knocks me on my butt. I've had chronic diarrhea since Taxol/Herceptin/Perjeta so they're going to do a colonoscopy in a few weeks. I've tried probiotics and dietary changes to no avail. Stool cultures are negative so they think it's inflammatory but they want to be sure.
I have a question about ports. How long did you keep yours in? Does TP play into the decision to keep it for a few years after tx is done? I read somewhere that Her2+ should keep the port for 2 years but I don't remember where or why.
Oh and just for the record...pathology came back pCR - yay!!!!
Bekah
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Regarding ports, I've read that some are advised to keep their's for awhile, but I was very happy that my MO said to get it out as soon as herceptin was finished. I asked what if I needed it again, and he said then we'll give you a new one. I got mine out during reconstruction sx.
While my port didn't really bother me physically, mentally I hated the thought of having something foreign in my body. (It was how I knew I'd never adjust to implants). I cannot begin to express how happy it made me to get my port out.
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rleepac - my MO likes his Her2+ patients to keep the port for a couple of years. Stats indicate that if you are going to experience a Her2+ related recurrence it usually comes within that timeframe. Generally, recurrences later than that seem to be driven more by the ER+ aspect than the Her2+, or so it is thought.
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Bekah My oncologist likes her patients to keep their port in for 2 years total because that's when most recurrences happen and you shouldn't get it put back in the same place (due to risk of blood clots). I kept my for the 2 years and thankfully never needed anymore chemo. It's great for blood draws, IV or even dye for scans if you have a powerport.
diarrhea is quite common with Perjeta too. I didn't get Perjeta because it wasn't approved at the the time. I do have IBS but have the big C instead. My first chemo was a challenge due to big C. Didn't have issues with Herceptin. I assume you have seen a gastroenterology. IBS isn't always the easiest thing to control. I am OK with diet mostly. I know what my triggers are. Have you tried Metamucil? I hear it works for both the Big D and Big C
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Thanks for the info on ports. I just haven't had the discussion yet with my MO.
I've tried Metamucil but it didn't help. I did finally see a GI specialist and that's when they decided to do a colonoscopy. I have that scheduled for Dec 2
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demarie - I was right where you are last Thanksgiving and can barely remember any details other than the profound overwhelm. It does get much better, maybe not easy, but better. The realities of treatment are most often easier than how you imagine them beforehand! Go easy on yourself this holiday season and take every offer of help you get! This time next year you will be where I am now, gratefully returning the manykindnesses shown me during this past year of treatment.
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I finished hard chemo on Wednesday; my oncologist wants me to keep my port at least through Herceptin, and maybe for a year beyond that. She said the same thing SpecialK said here: HER2 is most likely to recur in the first two years.
Here's something: she also said I'm NED since surgery; the chemo was just to "mop up anything that was left over" (negative nodes). She's not doing any scans or even tumor markers. . . is this normal? I mean, I'm okay with it; I know what to watch out for; I've scheduled my second MX and scar revision surgery for 12/30, to keep this in 2015 (knock wood). But no scans? I'm a bit floored!
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kate - yes, it is pretty normal and very common. Since you were node negative there would also be thought that your cancer was contained in the removed breast. Most oncs only scan for symptoms due to the prevailing thought that things can't be seen on a scan until they are of a certain size and/or causing symptoms, and finding them very early does not change anything. Also, there can be false positives, which then have to be investigated, and cause stress and unnecessary testing/procedures.
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I'm keeping my port for two years out. It's not a big deal; I go see MO monthly for a Zoladex shot, so I'll just get it flushed then.
Kate -- Yep, if you went the mastectomy route, there's not much scanning. Since I got a lumpy, I'll get mammos every six months. Otherwise, MO said that she might have me do an annual MRI. This may be because I was stage IIIA, (5 cm.+ and one node tested positive). So, for the most part, it's just blood work every now and then and taking my daily AI.
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My port came out shortly after finishing Herceptin. Mine clogged if not used weekly.
No scans unless symptomatic.
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My port came out with in days after last Herceptin. No scans just get a mammogram once a year and blood work done every 6 months.
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KateB79, congrats on finishing chemo/// breathe deep and soon you'll be feeling good...
I'm praying I can have my port out as soon as I'm done Herceptin, although that won't be until July, MO hasn't mentioned not doing that... It isn't painful, but I feel it in my neck all the time, and it hits the nerve over my collarbone. Integrative Radiologist checked it and said it could only go in that spot, so.... dealing with it...
Thinking of all of you warrior women out here! Having BMX Monday and then on to recovery!
Warrior on!
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one more here with port out days after the last Herceptin, yearly mammo. No other scans or blood work. MO appts every 3-4 months for two years.
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Sometimes, when I read this board, I wonder how much different everything was 20+ years ago, before we could connect like this. It's so good to know that we get similar advice, that MOs follow similar protocols, etc.
I'm thrilled to be done with TCP, but also feeling a little out to sea; for example, I don't get labs again or see my MO for six weeks (six weeks!), and I'm so conditioned to go every three. . . . I'm sure this anxiety is normal, and I'm working to manage it. Did this happen to anyone else?
In about a week, I should be feeling pretty good. I'm just not sure how to adjust to the fact that I'm not gonna get knocked right back down again! Maybe I can resume my life? What a thought!
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Hi Kate,
I totally understand your quandary. I am also university faculty and at the time of my diagnosis and three years following I served as Dean of Health. During that time I also taught a couple classes per semester face-to-face and one on-line. My surgeries were split-long windy road-first in December '12 and second July '13. I was healthy prior to cancer. Both of my surgeries were scheduled to give me about three weeks before the chaos of a new semester-but I was on-campus for administrative nonsense (I resigned as Dean last May and returned to nursing program director). I returned to campus with drains-one for the first surgery and two after the second.
My big advantage--and this is really big--I was running a Health Science Center and everyone on the faculty side had initials after their name. There were numerous labs with beds, a simulation center with a living room with a futon, always someone to access or de-access my port (windy road-dehydration, vomiting), and someone to tell me I looked like crap and take a nap or go home. We also have therapy dogs in the building and one was always up for a nap.
Another big advantage you share-is the women on this board. I received so much support and warmth and love I knew any decision I made would be supported. Someone always answered my questions, was awake in the middle of the night for a tear fest, and loved me regardless of my crazies.
No one is walking your path-but for me-I needed that so called healthy breast gone. I had two experiences of MRIs during chemo from hell and finding new "shadows and areas of concern". The second MRI led to stopping chemo-I was toxic anyway-and scheduling the first surgery ASAP. I had knots and lumps in the remaining breast and counted the days until it was gone. I was unable to have reconstruction at the time-another part of the long and windy road-and still am not cleared. And I am ok with that. One breast would take about five procedures and the other two prior to nipple reconstruction. Personally, I cannot imaging going through any elective procedure now.
Please know any decision you make can also be changed up to the time of anesthesia.
Much love as you continue your walk.
susan
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kateB79
True about our forum and the immeasurable help it has been in getting through treatment. But even more thought provoking and gratitude evoking is the realization that Herceptin has only been available since 2008.
We are very fortunate indeed.
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we are all different, so ports are usually a Drs preference unless you have issues. I had asked about when it could come out and his suggestion was wait for awhile. I did have to have blood drawn but the lab would not use the port, they were not prepared to flush it, nor do I think the staff was familiar. So don't plan on that use unless you are in a hospital. Hope everyone's thanksgiving was as good as it could be.
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Jerseygirl927 If I needed the port accessed and I wasn't having something done at oncology, I would go to oncology first to have it accessed. You should have also received a card with instructions. When I got my colonoscopy the nurse followed it although she knew how to access ports not all are the same.
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My port doesn't bother me at all and I usually forget it's even there. However, it does kinda stick out with most shirts I wear. I don't mind keeping it for a few years but I think my DH wants me to get it out because according to him I'm 'cancer-free' and it's not coming back. I wish I could be as optimistic as he is but I'm just not. He will honor whatever I choose but I'm sure he thinks I'll never need it again so I don't even talk to him about it
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I am on my second port-and will keep it as long as I can. I kept my first two years, it got sluggish, and I would forget to flush. Had my second put in about eight months later. I needed to start weekly IV iron again and my arms are out for that type of treatment. I am not supposed to have blood drawn from either arm and BP is very limited. My feet hurt way too much to allow IVs in my feet. My MO, BS, and general surgeon all recommended a new port and to treat it like the magic it is.
It bothers me occasionally but I am grateful almost weekly. I am VERY selective as to access though. Generally, I go to the cancer center for one of the nurses to access prior to the IV iron and I always go there for labs.
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Lago and SpecialK, in regards to removing your port, was it two years from having it placed or two years from final Herceptin? I'm 5 weeks post final Herceptin and no one mentioned keeping the port in longer. I still haven't made an appointment with my BS to have it removed. But I do have my first flush scheduled for 12/7. I will see my BS in January for my yearly checkup, so I guess I can talk to her then.
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amylsp - two years from final Herceptin was the minimum amount of time that my MO wanted the port to remain in place, but I actually still have my port. My port was placed during BMX with no external incision and it is subclavian on the left (non-cancer) side. It is very high up and the removal incision will show in virtually any neckline, so I was not in a hurry to have it removed. I have had a significant number of surgeries due to recon skin healing issues, most of them on the left. It has been a bit of a distraction and port removal took a back seat. My MO said at my last appt. in June that it is time for it to come out. I am having a new TE placed on Dec. 10th and my PS will remove my port at the new exchange sometime next year, so almost 6 years after it was originally placed.
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Thanks SpecialK! It's weird sometimes the different recommendations depending on the MO. I will definitely wait to talk to my BS and MO before making a decision. Good luck on 12/10. Hopefully your surgery marathon will end soon!
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amylsp 2 years from first put in (which was the day before my first chemo)
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Thanks Lago. It's a bit madding trying to make sense of all the different recommendations!
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Medicine isn't an exact science. A few months here and there isn't a big deal. The reason for 2 years is because most recurrences happen in the first 2 years I believe counting from diagnosis.
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"Medicine isn't an exact science." Lago, I agree 100%. In fact, I've started to think that it's about half science and half art. I said that to my MO the other day, and she agreed.
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amylsp - thanks! Yes, I would like the surgical saga to come to an end - it has been a winding road! Hopefully this TE goes in without incident and I will be able to see the light at the end of what has been an exceedingly long tunnel.
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Hello. I am new to this community forum but joined in hopes of reading and communicating with others in my similar situation. I have started chemotherapy and found out I am allergic to the drug Taxotere (I had a terrible reaction on my face). They switched to Taxol. Has anyone ever had this happen? My doctor said this drug is just as effective. I'm hoping so. Chemotherapy hasn't been too bad so far. I have been a bit jittery at times and the weird taste of food is strange. When can I expect my taste to come back? This whole situation is very scary.
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Hi Dawn!
I wasn't allergic to Taxotere, but I did get 12 infusions of Taxol. Yes, Taxol can affect your taste because it kills off taste bud cells. I've heard that you can suck on ice during infusions to avoid that side effect. If that doesn't work, you should know that your taste will come back a month or two after finishing chemo.
Best wishes!
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