TRIPLE POSITIVE GROUP
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Good Morning Ladies!! I've been off the boards for a while and hope everyone is doing well. It's the time of the year where my kids are crazy busy with after school activities, dance and clubs that I am in my van more than I am out....lol, but I don't mind
Anyway, I'm in search of some answers - I've been taking Tamoxifen since February 1st and in the last 3 weeks (approximately) I've been having charlie horse leg cramps during the night and my right hip feels like I banged it. I work out with a trainer 2 times a week so I thought I could just be sore from the exercises, however I spoke with a friend also on Tamoxifen and she has had similar issues. Has anyone experienced this? What have you done to minimize the side effects?
This morning I have my herceptin treatment and will be meeting with my MO, which I will share this info with him!
Wishing everyone an exceptional day!!!
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sharapril - ask to have your potassium and magnesium checked - low for either, or both, can cause muscle cramping and soreness.
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Zoziana, as far as scans you are being handled pretty standard. I had surgery first and since there was time, and my breast surgeon thought I would be a stage IIIA due to the size of my tumor he order scans. My liver had 3 spots. They thought cysts but continued to scan, I think it was 1 year or 6 months after chemo, 1 year, then 6 months till they were convinced just cysts. But I didn't have any of the other scans other than breast MRI before surgery and chest xray.
although we have a fast growing cancer it doesn't grow that fast. If you just had a scan done there will be little to no change. So I would ask "when should I schedule my next scan of my liver" and see what they say. Just remember that mets are found by patient having symptoms many times and finding it any earlier doesn't change survival stats. Too much radiation from scans isn't good for you either.
You are getting strong chemo. They don't mess around with HER2+. Early stage they treat to hopefully cure. They aren't saving the big guns. As far as biopsy being negative for HER2+, yeah that can happen because only 1 part of your tumor may be HER2+ and they didn't get that part in biopsy. That's why they test again after surgery.
BTW I ended up with no node involvement so ended up stage IIB, to everyone's surprise except mine. I never had a whole body scan. Just bone scan and abdomen CT and maybe the first time they did lungs but I don't remember. No brain scan.
My tumor was 5.5cm IDC+ 1cm DCIS. MRI found LCIS in other breast. I had very dense breasts
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I had a breast MRI and a chest x-ray after I was diagnosed. That was it. They said they don't routinely do scans for early stage/node negative patients. At the time I wasn't sure how comfortable I was with that. Last year I had a bone scan due to hip issues. My MO wasn't concerned but she wanted to put my mind at ease. There have been times here lately where I've thought about wanting a scan to make sure everything is ok. The 25th will make two years for me. I know the greatest risk is in the first three years. Next year can't come fast enough!
As far as chemo for metastatic, I've seen a lot of Her2+ patients (metastatic) that start off with TCHP. The theory I've seen is that they use the big guns to get them to NED and then continue on with maintenance treatments of either Herceptin alone or Herceptin and Perjeta.
Shar, I had some charlie horses while I was on Tamoxifen. They went away when I increased my water intake.
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Magnesium and turmeric for leg cramps on tamoxifen. My feet cramp if I miss a day.
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Ladies, thank you all--This is just the information I needed to be able to ask appropriate questions regarding scans and treatment at my MO appointment on Wed. I am so grateful.
As for scans, I think a PET is merited. I'm not a fan of more radiation than one needs, but as the mother of a child (now college age) with 3 exceptionally rare, very serious diseases that doctors could not believe that any young, beautiful person could have (and certainly not 3 separate ones) I have learned that rare can happen, and often more than once.
I'm going to ask for either a PET overall body, or, m if they tell me they will give me the same treatment I would get if they knew the liver spots were mets, then I could skip the Pet and scan later down the road. (Meaning probably adding an additional chemo agent to the tAxol and also adding the Perjeta, as it does clearly seem to increase efficacy of Herceptin.)
I realize now I'm not comfortable with less than those outcomes. Thank you all for helping me with more info so I could understand this better. I will update after I discuss with my MO and share anything new I learn.
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Trying to find someone who has been through similar treatment plan as mine. I have infiltrating ductal carcinoma, triple positive. I was diagnosed in mid-february and just finished up 4 rounds of Adriamycin Cytoxan. I am to start on perjeta, herceptin, and taxotere in two weeks and will get 4 of those, each three weeks apart prior to surgery. After surgery, I am to get radiation for 4-6 weeks and herceptin for a year.
Has anyone else been on this regimen? I am curious about how bad the perjeta, herceptin, and taxotere will be as well as what the year of herceptin will be like.
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786tex I did 4 rounds of AC followed by Taxol, Herceptin, Perjeta but my THP was weekly for 12 weeks. The THP was definitely easier than AC but not the 'walk in the park' that my MO said it would be. I still had cumulative fatigue, chemo brain and watery diarrhea (from the Perjeta). I worked part time through AC but quit working after my second THP due to the cumulative fatigue and diarrhea. The H only wasn't too bad for me. Mostly just felt achy and cruddy for 2 days after infusion and a runny nose but it was tolerable.
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786tex, I had the same regimen as you. AC wasn't too bad but the THP was a lot easier. My taste buds were off for about 24 hours after each round from the Taxol. I had a few episodes of diarrhea that I believe was from the Perjeta. Other than that, I felt pretty good. Herceptin alone didn't really give me any SEs. I did notice as the year went on that I became a little more fatigued the first 24 hours after my Herceptin treatment. I hope this helps!
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786tex if your tumor was over 6cm of invasive IDC aren't you stage IIB? My tumor was 6.5cm total but only 5.5cm was IDC. I had no node involvement. Staged IIB.
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Additional question: re genetics, Herceptin, and tumor growth genes
Has anyone in this group (or maybe I need to check in elsewhere on this site? suggestions?) familiarity with having a certain gene mutation on the FGFR4 gene that promotes more aggressive cancer growth, and a small study of 372 people found having this snp mutation rs351855 reduces efficacy of Herceptin in those with this mutation?
I have this mutation (known from 23 and me) and will be talking to my MO about it this afternoon later, and am researching it. It seems to affect STAT3 signaling, allowing a "back door" for extra signaling for growth to get into the cancer cells and other tumor growth cells so they reproduce even faster than "normal" for that cancer. STAT3 research has been going on for a while, since at least 2009 per papers I have seen, but the one that most struck me was published only in Dec. 2015 and one of the main researchers was the Max Plank Institute in Germany and the scientist who discovered Herceptin--it's mainstream research now and applies not just to breast but to other cancers like colon, head and neck, skin, etc. And, running my material from 23 and me through Promethease, their database pops up with the info from snPedia that has that study of the 372 people.
To me, this might matter in terms of adding Perjeta to the Herceptin (as that seems to increase Herceptin efficacy), and to hitting me harder now with adjuvent post-surgery chemo beyond just Taxol (as I had nothing for the past two months when they thought I was HER negative, just the BMX).
Any other forums where I might post this if no one knows? Is there a science-question type forum?
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Rleepac & Mommato3 Thank you for your replies. I know it is different for everyone but it is nice to have a little better picture as to what to expect.
Did either of you have problems swallowing on the Taxotere, Perjeta, Herceptin? I am asking because I have had terrible problems swallowing while on the AC (swallowing water feels like swallowing broken glass) and I am hoping that I will be past that with the new regimen.
Lago- I get varying reports on the staging. The oncologist initially said II-B but the radiologist said III due to the lymph node involvement. The radiologist also said that there are different kinds of staging so your guess is as good as mine.
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zoziana - you might contact Genentech and ask this question, or attempt to contact either Dr. Axel Ullrich, or Dr. Dennis Slamon at UCLA. In reading about these particular genetic mutations, it appears that they are pretty common amongst cancer patients but this specific research is new enough that it may not be usable as a basis for requesting adjuvant Perjeta. There is no specific science question thread on BCO, to my knowledge. Have you spoken to your MO about this, and has he/she made a request to your insurance to add Perjeta?
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No, I never had problems swallowing. Could be thrush...that can happen with chemo and it will make your throat feel that way. Talk to your MO and let them know so they can give you some medicine for it. You shouldn't have to suffer with that
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786 - you also could be experiencing some reflux that is causing irritation, and you can have this without heartburn so it is sometimes difficult to pinpoint that feeling as reflux. It might be worth talking to your MO about trying something to reduce your stomach acid. Chemo causes soft tissue irritation generally, so any excess stomach acid may make that worse. Hope you feel better soon.
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special K- Good advice. Am speaking to oncologist in about an hour, and will see what I learn. Meanwhile, I have identified a good contact at Genentech and think it is a good idea to check with them. Appreciate the names of some folks at UCLA. I may need to go outside my HMO system for a second opinion somewhere, or maybe, I won't. I will keep folks updated on what I learn. Surely there will eventually (and unfortunately) be someone else coming along here who will also encounter these same issues before the research is clear!
Thanks for the prompt reply today!
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786tex, I didn't have any problems with swallowing either. My biggest issue with the AC was that horrible taste in my mouth and fatigue.
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zoziana - Dr. Slamon at UCLA is actually the one credited with the development of Herceptin and convincing Genentech to continue trialing the drug, as there was some resistance to continuing to fund the research. Revlon and Lily Tartikoff's Fire and Ice Ball raised money so Dr. Slamon could continue his groundbreaking work with Her2+ patients, and this helped bring the drug to the market. If you watch the movie "Living Proof" you will get the background on this. Glad you can speak to someone at Genentech - hope they can provide some answers for you.
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786tex if you tumor is over 5cm and you have node involvement you are stage III like your radiologist says. If only a few nodes then probably stage IIIA. It's just your profile says stage IIA and you are definitely not that.
I had trouble swallowing. Especially things like white chicken and dry stuff. Needed water to get it down. I thought it might be from surgery, that pipe they put down your throat but noticed after my 1st chemo infusion. Mom had the same issue after surgery. But then we found out my sister has it at times so maybe not. Gerd can cause this too.
I mentioned to my MO but she didn't know what it could be. Rarely happens now.
Zoziana I have read that too. You are doing the right thing discussing this with your oncologist. You might also want to get a 2nd opinion.
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have the same problem with the swallowing. Hurts to even drink anything and knives is exactly the feeling. I was given magic mouthwash in case of this, for sores in mouth or throat. It works wonders and if you use it as directed you should be fine in the next day or so. Also, watch what you eat, soft foods help,a lot.
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FYI for sores in mouth I sucked on ice chips. Worked real well. My MO told me to do this after I got a mouth sore right after 1st tx. Gerd was another issue. Was on 2 meds for that by the time I finished chemo. Still I feel I had it easier than most
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Is Herceptin known for eye issues? I can't remember which of the TCHP is the culprit and figured someone here could answer pretty quickly. I don't remember having big issues during chemo, but just finished radiation and still have 4 months of H only. In the last month my vision has gotten really blurry and I wasn't going to bother going to an optmologist until after I finish treatment in August. Thoughts?0
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Musosgirl My eyes got blurry for a few days but I figured out it was from the Emmend I took at chemo treatment. I did go to the opthalmologist when I finished chemo and they said my distance sight changed and needed glasses. Told them I wanted to wait at least a month after chemo before I get glasses... and sure enough to this day I am still not needing glasses for distance.
But I do have dry eye since chemo. It could be from the medications you are taking now. I am convinced the AIs contribute to dry eye. I only need to use eye drops 2X a day (I use Refresh) but you should go to your ophthalmologist to have this checked out. BTW sight chances can be a SE of diabetes too.
I did not find Herceptin affected my eyes
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Good morning Ladies, Just catching my breathe from this past treatment. #4 was a doosy! major fatigue. This one has kept me down for some time and the stomach issues are not getting any better. I really believe that it is the Perjeta. Treatment was on the 11th and it is the 21st and I am still not feeling myself.
I too suck on the ice chips and do not get the ice sores. Thank God for that!
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4th was one of my worst. Are they giving you anything for stomach issues? I was on Protonix and eventually Carafate Suspenion for the gerd it was causing. I did not get Perjeta so I had constipation. But if you are having issues with diarrhea you might consider Metamucil but check with your MO first. linky
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Thank you Lago. Saw my MO today and he said vision issues are more of a steroid thing and since that was last fall it shouldn't be from anything I'm on/doing now. He said I should see the eye doctor and that maybe the steroids triggered some cataract growth. He kinda talked today like he wanted to do Lupron and an AI but we are starting with Tamoxifen. But first I am switching from Paxil to Effexor--start Tamox in 3-4 weeks if the switch goes well.0
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My fourth infusion was the worst, too. I don't think I'll ever forget it. It gets better.
Taxotere can cause horrible dry eye. It happened to me; my eyes were so dry that they would water CONSTANTLY--I started walking around with a tissue to blot them. I haven't had that problem with Herceptin-only infusions, though.
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NattyB, I am new to this site and learning how to use it as I go. Would you explain why the bilateral choice? I would like to have peace of mind and have wondered if that was an option. I see MO today. I am newly diagnosed.
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Another random question from yours truly: what are your thoughts on alcohol consumption? I abstained completely for six months, and have recently started to have a beer or two after work again. I never would have given it a second thought before, but now I wonder if I should cut it out, like, forever. Thoughts?
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