TRIPLE POSITIVE GROUP
Comments
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Runningcello what is the palb2 mutation? Now we are talking about doing Lupron instead of the zoladex. There is a hospital very near where I live that has Lupron. If I get the zoladex I'll have to drive the 3 hours to the city. This is the first time EVER that I really hate living in such a rural and isolated place! It makes getting medical care so tough. And congratulations on your complete pathological response!!! That's awesome
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I don't know anything about Lupron, I'm sorry facilities aren't closer with what you want.
PALB2 mutation is some genetic mutation which was recently discovered by doctors. It has a 20-50% of initial onset of breast cancer .. therefore it is not as high of a risk as BRCA1/2 but it is a moderate risk. Ovarian cancer is also linked to this gene but the relationship is still being determined. Family history of pancreatic also puts someone at risk, THANKFULLY nobody in my family has ever had pancreatic cancer. I am part of a family with 16 total aunts and uncles on both sides of my family and over 50 cousins.
I don't know much more about the gene but I will probably learn more about it when I meet with my oncologist on Tuesday. For now, just extra screening for ovarian and breast.
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mamadewbs I did Lupron during chemo to help preserve the ovaries, I believe it is the same thing as zoladex - at least when used for this purpose. I don't think it matters which one you get. Although I am 9 weeks post chemo and no periods yet
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runningcello- I haven't had any genetic testing done yet but they keep saying I will at some point. Maybe it's a blessing in disguise because they will monitor you extra close! I stay so nervous because I always feel as though I'm not being monitored close enough!
Windgirl- I'm sure they will return! I bet your body is just still recovering from all the treatment. How are you feeling other than that? Good I hope! I go next Wednesday for my 3rd treatment. I didn't tolerate the taxotere so well last time so I'm pretty nervous!
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wind girl - mine came back a few months post chemo. Patience. But now we are shutting my ovaries down with Lupron, in response to SOFT trial results.
Mamadewbs - thinking of you and sending strength for your next chemo round. Carbo Taxotere is rough. I had a hard time with it too. You can do it!
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formydaughter- thank you so much for your kind words! It is so nice to be able to come here and talk to people that know exactly what I'm going through. I have a question about the soft trial results you mentioned. Will you take tamoxifen and lupron or one of the drugs they give post menopausal women?
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mamadewbs - You are very welcome!
We are aiming to switch to an AI with the Lupron. If the side effects do not agree with me, then we'll continue with Tamoxifen. My MO said all 3 arms of the SOFT trial would be reasonable choices. For my particular stats, there is about a 10% difference in DFS at the 5 yr. mark, so I wanted to try this. We are taking one step at a time. First determining how Lupron impacts me. So far, so good. Next, we'll change out the tamoxifen to an AI - I think the one that was used with the trial. But if I cannot tolerate the AI, my MO made clear that tamoxifen would still be a good and effective treatment for me to continue.
They've known for awhile that AIs work better than tamoxifen. But the earlier studies were with post menopausal women, since AIs do not work for pre-menopausal women. SOFT presented the idea of younger women who had chemo and then got their periods back - that for this demographic, OS + AI had better results than, OS + tamoxifen, which had better results than tamoxifen alone.
Current guidelines say tamoxifen for 10 yrs. (used to be 5) and AI for 5 yrs. Some people think that they will next show the AI's to be beneficial for 10 yrs too. But you bump up against bone loss. My original plan was 10 yrs of tamoxifen. I kind of liked the idea of continue it for that long - felt like a cushion against recurrence worries. But, my SEs have not been without notice. My bone density is high, but if that changes, that would play a role as well. So, if I tolerate the AI, then the plan is 5 yrs of that and then see where we are and what the latest/greatest is in standard of care.
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i thought i was crazy when i responded so terribly to TCH+P .. but i'm so thankful for your ladies because it's difficult to explain why food is repulsive on a daily basis during treatment and why moving is not going to happen unless there is a fire. i am so thankful my body has now forgotten what chemo has felt like in case i am ever given another diagnosis.
i'm not sure if the people surrounding me at the cancer center were just on an easier regiment - but i felt like i was the only one that was really debilitated!
have any of you had a hard time with the bathroom during and after chemo? i feel like i'm always constipated yet i use the bathroom every day.. even twice sometimes. it's just utterly painful and i don't know if that's from chemo screwing up my body or simply my diet being horrible.
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Yes! It's one extreme or the other for me. I either have either severe constipation or bad diarrhea. This seems to be my new "normal"!
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I had a lot of bathroom problems when I was going through chemo. On AC it was horrible constipation. I always felt bloated and it was painful when things started moving. I blamed the steroids. On THP it was diarrhea. I was really hoping all the diarrhea would cause some weight loss. *sigh*
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Runningcello, I did Taxotere and it really messed me up. I couldn't finish it, the onc said it would kill me lol.
I had severe diarrhoea, as well as a whole host of other severe side effects.
I'm now four years out, still have the big D, but also have Irritable Bowel Syndrome, so can't eat a lot of things. My gastro specialist says it's caused by chemo, who knows, maybe it is. I've worked out the worst of my triggers (lactose for me) and many of the minor ones and am living with it fairly easily now.
Some of us react severely to chemo and some have relatively few problems, it's just "one of those things"!
Trish0 -
I had terrible problems when on chemo too, I'd start constipated and then end up with severe diarrhea. Nothing was the right color, smell, etc. TMI. Sorry. I ended up in the hospital several times, in large part from dehydration from the non stop diarrhea. It was a big factor in why they took out my P and then changed T's and then stopped my TCHP treatments altogether after 4. They really thought the P was to blame for it, but it wasn't, or at least if it was, I never had enough time to heal completely and the following treatment just aggravated my system. By the time I went off everything, I was at level 3/4 toxicity with liquified mucus membranes through my digestive tract. My MO still jokes -"remember the time I tried to kill you..." I hope I forget about it enough to agree to chemo again, if it is ever needed.
But no weight loss from it - the steroids prevented that! So, fat, bald and boobless it was. A real sexpot.
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Mamadewbs thanks, i do feel great now other than the achey joints there are really no continuing side effects that I can feel. My hair and nails are growing out, and the dark circles under my eyes did go away considerably. Swelling is now minimal. For up to one month after final chemo I was out of breath if I walked a block but at 9-10 weeks I can walk 4 miles with no problems. You will be surprised how quickly things get better once you stop taking them.
I would say the worst side effect for me was heartburn and bad taste in mouth. I had all the others too but they changed from chemo to chemo and did not all happen at once.
Now I am doing radiation, just did #7 today and have 26 more to go. I hope it all goes very smoothly for you. Feel free to PM me if you have any questions.
Formyaughter thanks for giving me hope
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Runningcello - I'm thinking Herceptin is messing with my lower GI, I've had constipation issues, where I haven't gone, then get 'regulated' again and the Herceptin and constipated again.
Wind - I was going to post about the 'arthritis' effect of Herceptin. I'm not happy with it. ANYONE - is there a secret????
SpecialK - wow, what are you not a resource for... you even can advise us on BB&B coupons - Love you!!!
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knmtwins - Haha! I am happy to help with BC stuff, but aside from that I am a world class shopper too!
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I just finished # 2 TCHP and I am not sure what is normal or not. I have the big C unless I take something. Everything smells weird and tastes bad too. How do you know which therapies cause what?? I had nausea so bad first 5 days. Nothing helped.
Windgirl. Good to know about being out of breath doesn't last.
Patty
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PMR53, unfortunately you don't know which agent causes each side effect, you kinds have to treat them as they come, I had taxotere as well with perjeta/herceptin, I'm almost 4 weeks out from taxotere, still having issues with constipation, taste buds are off, eyes watering and nose running, I'm on to herceptin only and am dealing with the muscle tightness/ aches. Just when you think you have it figured out, your body decides to handle things differently. Best wishes to you as you continue with treatment
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PMR53- is there a January chemo sisters topic? I lived by that when I was doing chemo, but yep, welcome to TCHP. Nausea, Constipated, then Diarrhea. My MO said just keep up the salt. I tried so hard to drink tons of water to flush the toxins, but YUCK. I'd make a tea with green tea, ginger, sugar, cranberry juice and lemon. I'd eat bagles with wipped cream cheese and a slice of danish ham. Sometimes french toast was good.... Keep up your sodium with your liquids, my MO said, eat potato chips, or saltines... whatever worked. Oh, he also said DO NOT eat your favorite food, as you might not like it after chemo, if you do. Just keep trying to eat and drink.... so sad, because by the time food tastes OK, it is almost time for the next cycle, but hey, only 4 more to go, and yes, the breathlessness gets better... BUT let your MO know, they might want to do another heart scan just to be safe.
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PMR53, I had constipation and diarrhea as well. It comes with the TCHP territory, I think. It was worst during my 5th and 6th cycles, but I had it here and there throughout. If you can stay ahead of it, you might be able to minimize the problems. Talk to you MO about what's OK, but for me they encouraged prunes and a stool softener, and miralax if those didn't help.
I second the suggestion to find the January chemo group. My August group helped tremendously, and they still feel like "home" to me on this site. We were all in it together, and that was comforting.
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Cassie,Rose, KMnTwins : thank you for getting back to me. TCHP is brutal I am beginning to think. SE differ day to day. Just when you get one nipped in the bud, another one pops up. I guess the nausea is the worst. I have everything too. Does extra sodium help? About everything tastes bad. So happy you guys are on the other side. That is amazing. I will never take feeling good for granted again.
Patty
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Cassie,Rose, KMnTwins : thank you for getting back to me. TCHP is brutal I am beginning to think. SE differ day to day. Just when you get one nipped in the bud, another one pops up. I guess the nausea is the worst. I have everything too. Does extra sodium help? About everything tastes bad. So happy you guys are on the other side. That is amazing. I will never take feeling good for granted again.
Patty
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Oh yes, it's a daily adventure.
I kept a journal of my SEs and what meds I took, so that I could look for patterns for future cycles, and so I could more easily tell my MO how I was doing cycle to cycle.You will get to the other side, too. Monday will be 8 weeks PFC for me, and it feels like a lifetime ago in some ways.
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I would not recommend extra sodium. You'll retain more fluid. I found Metamucil worked great for me with the big C. Started taking the night of chemo. Continued till things moved normal. Things moved slower for a few days but moved. My first chemo the constipation was hell. Finally moved but ended up with hemroids.
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I joirnaled my SEs too. Started off as a regular journal but ended up just as a daily list of SEs and meds/times consumed. I recently picked it up but couldn't read it. Too awful. Chemo is so rough. And there did always seem to be new SEs popping up - some probably from the meds taken to relieve other SEs. You'll be back Patty. It takes time. But you'll be back and strong again.
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Hi all. I'm newly diagnosed triple +.
I'm starting treatment next week after my Port insertion.
I will be getting AC (Adramycin and Cytoxan) every other week for 4 cycles followed by Taxol weekly for 12 cycles.
I will be having surgery, lumpectomy vs mastectomy depends how much tumor shrinks. If lumpectomy, radiation. I will also be on Herceptin and Perjeta. When it's all said and done I will go on Tamoxifen for 5 years.
I've been enrolled in the Perjeta trial. Anyone have experience with this
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I was not in the trial, but took Perjeta post BMX.
Sending you best wishes, thoughts and prayers during this scary time. We are here for you!
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FrannieS,
Sorry you have to join us. I had a similar treatment plan to yours. I got Perjeta with my Herceptin and Taxol infusions after I finished AC, but I wasn't enrolled in a study. Due to my neoadjuvant chemo, my tumor disappeared, and I ended up with a lumpectomy. They ended up taking out my surgical marker and a tiny pocket of DCIS. Of course, my surgeon also ended up taking out 20 lymph nodes....but I'm recovering from that. I'll start rads soon.
Good luck with your treatment! At first, I wasn't that thrilled to be a triple positive, but there are targeted therapies for us and our tumors often respond well to chemo.
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SpecialK - I think you might have mentioned that slowing down Herceptin only infusion from 30 to 90 min might help reduce the 'arthritis' side effects. My MO has me at 60 min, but I'm ready to ask for 90. Also, what did everyone else do for this??? I don't remember it from chemo, but that might be chemo brain, or I felt so bad, it wasn't a priority, so I'm curious. I wonder if the Claratin was helping with it as well as the Neulasta shot???
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knmtwins, I had severe pain from my loading dose of herceptin, I had to call MO for pain meds because Tylenol didn't touch it, now that I'm on herceptin alone, I've kept my infusion at 90 minutes, but I'm still experiencing muscle tightness/ aches, I feel like I'm moving like a very old person. I'm taking Tylenol, but I don't think it does much, funny thing is when I went for genetic testing, the Geneticist warned me about herceptin and told me to keep moving/walking, now I know why she said that. If any one has any thing that helps with this muscle pain, I'd certainly appreciate the info! Not sure if I can tolerate a whole year of feeling like this
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How is radiation going? Is the radiation being done in the prone position or on your back?
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