TRIPLE POSITIVE GROUP
Comments
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Roeserx what kind of mitts? How did you keep them cold/frozen? Did you do your feet too? I am getting confused because some people are doing the nails only and others are saying cover your whole hand and bottom and top of feet. Not sure how much I need to do.
Gooseberry I am only a step ahead of where you are! I have been the las week-week and a half doing bone density heart echo and PET. See my MO Monday to go over tests and get a start date. And like you this forum is blessing to me!!!
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I got those 'soft' ice pack thingies, and kept them in an ice chest/lunchbox thing, and rotated them when they became uncool.
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gretagirl, I used Elasto-gel mitts and booties. I work next to the infusion center and we have a subzero freezer and use a styroform cooler. I do have to swap them out after 45 minutes. Start 15 minutes prior to start of Taxotere, thru and 15 minutes post infusion. Tomboy is right as well you can use gel packs or even bags offrozen peas. My first infusion I didn't use anything so the nails and neuropathy may not even be an issue. There is forum on this for the cold caps sorry I do notrecall the name but you can type it on search.
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That is another thing I wonder about. I am not getting any kind of scan to see if anything is anywhere else. Both the surgeon and the oncologist said with it not in the lymph nodes there is a very small rare chance it would be anywhere else so echo, port, chemo class then on with the show. I see a lot of her2 peeps getting pet scans and the bone density and I have neither... so I have put it in my notes to ask about
Nice to have another triple positive close to where I am gretagirl
I looked in the chemo threads and there are not many! We can get though it together 0 -
I didn't get any scans either gooseberry. I think most MO's only order scans if there is something suspicious in the bloodwork or a worrisome symptom.
I think the bone density may only be needed if you are doing AI's, to get a baseline. I had one done just prior to my cancer dx. MO said we'll do another after I've been on AI for 2 years.
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gooseberry, when you gets chance update your profile and make your settings public.
I had a scans post surgery the Monday before starting chemo on Wednedsay. Echo because the H can cause decrease in ejection of left ventricle. A bone scan to look for bone mets but be forwarned that arthritis and previous broken bones can show up as hot spots. CT scan looks at organs. A dexascan is the bone density test, used prior to starting AI 's. Done every 2 yrs. usually like Debiann said. Mine being followed due to thyroid and 4 yrs of Tamoxifen.
Hope you get a nurse navigator who can help you sort out questions. Keep a binder with your results and dates and questions as well, it helped me.
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I was given 12 taxol/ herceptin and then herceptin for the rest of the year. It was what UCSF recommended for me since they were working off the results of the Dana Farber study that recommended that protocol for HER2+ Tumors smaller than 1 cm, (mine was 7mm) no nodal involvement and clean margins, it seems that the T/H is a good fit for patients in what used to be considered a grey area re : chemo. This dats came out in Dec right after I was diagnosed,
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My tx consisted of carboplatin/abraxane/ herceptin than A/C. Finished. With Radiation.
Sherry
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abraxane lucky you. Just a shot right? It's a more expensive chemo and usually reserved for advanced patients when they fail other drugs if I'm not mistaken. It's a good one.
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lago - I think it is IV over 30 mins, usually used for advanced stage, but also given to those who are sensitive to the other taxanes and the solvents used.
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Lago,
It was part of the clinical trial I was in...
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I figured sherry might be sensitive to the taxanes. Cool that you are part of a trial.
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Has anyone heard of Brisdelle for hot flashes? My insisted onco that I see my gyno for a pelvic exam and she gave me a month and a half's worth of free samples to help with hot flashes - Effexor just can't seem to do the trick even at 225 mg., plus I had awful side effects at that high doseage. I took my first Brisdelle last night, along with a lower dose of Effexor (75 mg) than I have been taking. No noticeable improvement yet though.
Gooseberry - I was stage 1, grade 2, HER2+++, no node involvement but margins were not clear - had to go back in, tumor size was .6 - .7 cm. I was suppose to have 6 TCH infusions, then finish the year with Herceptin every 3 weeks. I also had 36 rounds of radiation and will have to take Tamoxifen for 5 years. I couldn't continue with the chemo and Herceptin due to side effects (doctor stopped my treatment). I was told that it was standard treatment for my cancer but since I could not continue.......
During the 4 chemo infusions that I did get, I was not allowed to use ice on hands, feet, head - onco said 'You are not to protect any part of your body from these drugs." I of course lost all hair, my feet looked like I had walked through boiling water and I still have very slight numbness to finger tips. I don't know when my fingernails will be normal again, if ever. Big toenails had turned loose but they look ok now.
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blownaway - what anti-hormonal are you on? Brisdelle is paroxetine which is an SSRI anti-depressant (Paxil) and it is questionable if it should be mixed with Tamoxifen. Here is a link. I think per its own advertising it has not been tested on breast cancer patients, and it also carries a warning of bone fracture issues - could compound AI related risk.
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Went to MO today my PET was clear!!! Heart and bone looked good. If this bladder infection ever clears up I will start treatment. I go friday to do a urinalysis. MO said he doesn't think I will need the ice packs but if makes me feel good then use them. He has never seen the nails do anything but minimal color change with my dose and only 6 treatments.
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gretagirl - there are a number of us on this thread who had nail issues, some of them permanent - I would do the ice. I took four bags of frozen peas in a cooler and used them during the Taxotere infusion. It can't hurt, can only help.
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Thanks SpecialK I am going to. I am hoping my nurses help me with changing the ice packs/frozen peas out.
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greta - I didn't change my frozen peas out. I received my TCH in order, so the T was first, after pre-meds. I put a bag of peas on the front of each foot, and put a towel on my lap with the other two bags. I dug my nails in like a claw, occasionally using my right hand to get crushed ice to keep in my mouth from an insulated tumbler that I brought. I could do it myself and it worked, I had no ridges, lines or discolored areas. When I got home I just refroze my peas again. I also painted my nails with dark polish on chemo day, then next day removed the polish and painted on a coat of clear nail hardener. I painted on a coat a day for seven days, then removed it and started over - repeating until the next chemo day.
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Gretagirl - This is my ring finger 8 months after last infusion. I woke up one morning with the ring fingers on each had throbbing. A few days later, the nails pulled away from the nail bead. My doctor would not let me use ice.
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Special K - I am taking Tamoxifen. I guess I'll have to pitch the Brisdelle and get some Icool and anything else you can suggest that would mix with my current cocktail. I guess my gyno is just not up to date on cancer drugs. Thank you!
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blowaway - I have had many hot flashes a day since I had a total hyst/ooph in 2001, nine years prior to my BC diagnosis. I had them as frequently as hourly and they are severe enough that other people can tell I am having them - I turn red and my face gets damp. Chemo and aromatase inhibitor drugs have not made them better or worse - but I did have improvement by changing to a non-inflammatory diet. I follow this, and even though it is a hard way to eat I lost the weight I gained from chemo steroids and AI drugs, 22 pounds which had been stubbornly holding on despite walking 5 miles a day and eating 1200 calories of healthy food. I was able to lose with no exercise due to three surgeries over three months last year. My hot flashes are milder and fewer. I still have issues at night but have found that I do better in a really cold room, light blankets, and wicking pajamas.
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Blownaway thanks for sharing. I will use the ice. If I ever get to that point. This bladder infection is still hanging I can feel the pressure again and I am still on the antibiotic! I made an appt with the urologist . Will see next week.
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Hi Gooseberry -
I was on the fence with a negative HER2 biopsy (1.8) before surgery. The path report then flipped to 2.05 after surgery but my doctor missed the finding so chemo was not on the table until I saw my MO - boy was that a surprise since I was told I only needed radiation to the left breast for 6 weeks. (My breast surgeon said she had only seen this once before 7 years ago.) After an Oncotype showed negative HER2 again, they re-tested with FISH at the USC lab that did the Herceptin clinical trials and HER2 was 2.10. The oncotype score was 25, again right on the fence for chemo. No lymph node involvement, clean margins, but it was IDC so probably in blood stream.
Anyway, I just started TCH: 6 cycles of Taxotere and Carboplatin with a year of Herceptin.
My doctors do not do PET Scans because they feel the risk of the test does not outweigh the efficacy of the findings. They feel the chemo will take care of whatever the PET Scan would find, so why put your body through it. Anyway, that was their response to my question.
Good luck and keep posting. I also follow the July 2015 Chemo group so follow that one or the August group when it starts. There is lots of info and great insight as we go through this together
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Hi runningcello -
Congratulations on your last Herceptin infusion. I just had my first loading dose yesterday so it's nice to know there is light at the end of this tunnel!
Stay strong (and a little crazy never hurts.)
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Hi Ladies,
My name's Kate; I'm new here. I was diagnosed on 7/2 and had a mastectomy on 7/6. I'm healing really well from the surgery and trying to learn all I can before my first onc appointment on 7/29. Based on what I've read (here and elsewhere), I'm looking at TCH chemo. . . . Any advice for me, other than the cold packs for hands and feet?
Has anyone heard of only doing a taxane and Herceptin? I ended up with two tumors in the breast (so, so glad we did the mastectomy), one measuring 2.4 cm and the other 1.3 cm. Grade 3. Now that I'm not freaking out the way I was a week ago, I'm ready to absorb any info you can give me.
Here's some more info: ER+ (80%), PR+ (80%), HER2+. Beyond that, I think we're waiting for my insurance company to approve genetic testing. . . .
I'm married, 36, no children (that was in the long-rage plan before this happened). I work full-time as a university professor.
Thanks in advance for your help and guidance.
kate
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kateb - so sorry you find yourself here, but welcome nonetheless! There is a taxane only regimen - 12 weekly Taxol plus Herceptin, but I don't know if they would recommend it for multi centric breast cancer, with one tumor greater than 2cm. If it is something you are interested in you should bring it up with your onc. As far as advice, I would honestly wait until you start to see what you need - some people have assorted GI issues, affected taste, neuropathy, etc. - but everyone doesn't experience the same side effects. It seems to be a process of figuring out which things you will experience and how to deal with them. I would not take any laxatives or softeners until you figure out if that will be a problem for you - I had the opposite so taking those prior to my first chemo would have been disastrous! I was consistent with that SE all through so investing in a big tub of laxatives would have been a waste of money. I went through a lot of Aquaphor - I used it for lots of things, chemo can cause dry and cracked skin. Lubricating eye drops are pretty universally used to combat the taxane induced dry eyes that produce excessive tears. I know that sounds counterintuitive, but the eye drops help. I would say stay ahead of nausea - better to prevent it than try to get rid of it. A lot of people use the salt/baking/soda/water rinse multiple times a day to stave off mouth sores. Ask your oncologist how to get in touch with them after hours so that if you need something you can contact them for help. I tried to do things ahead so that right after chemo I had fewer responsibilities - I grocery shopped and cooked ahead, did laundry, paid bills, etc., so that I could just relax and rest. If friends and family offer to help - let them, it is good for you and for them. I am sure others will offer advice shortly. If you have specific questions, don't hesitate to ask!
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kateb,
I work full-time as a university professor, too. I chose not to take FLMA during chemo or rads, but my chair made some accommodations for me. He assigned me two TAs who had lots of teaching experience, just in case I caught a bad infection and needed someone to help with the teaching/grading. He also allowed me to reduce my service commitments -- I quit being Chair of the Undergraduate Studies Committee, eg.
I made it through the year OK, and even got decent student evals. I did work at home a lot, but made sure to be on campus at least three days a week.
I agree with Special K that your MO will probably recommend something more than Taxol-Herceptin for you, given the multicentric, Grade 3 character of your tumors. You might want to check into getting Perjeta -- that's the latest targeted therapy for HER2+ cancer and studies have shown it to be very effective. My best advice re: chemo is to hydrate, hydrate, hydrate.
Another thought: a friend created a Lots-a-Helping Hands group for me, and it was a big help. Every Wednesday, someone would bring a meal, and the members raised enough money to help buy my autistic twins a new swingset. Of course, I have three kids, so I did need as much help as I could get.
Best wishes to you! Hope your treatment does the trick.
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Kate,
Welcome-but sorry you had to join. This is the best group of women you could ever find. Ever. Be sure to find your chemo group-probably August 2015 since you see your MO the end of July. That group will become as sisters as you go through the treatments and healing together.
I did not take leave during any of my process. The day I had THE mammogram I signed a contract to serve as Interim Dean of Health and found out my now ex-husband had a date that night with a former nursing student. Quite the saga. As a nurse in a health science center I went to work as Dean with drains, my port accessed, nauseated, and conducted business from the chemo chair. I knew if I stayed home I could fall into a black hole. I took naps at work (my building had more beds than some hotels), brought my newly crowned therapy dog to work every day, pushed an IV pole around as I received extra fluids, and kept going. I will admit I used my health as an excuse occasionally to get out of some horrid meeting. The first day of the semester my faculty and staff wore Bald Caps (I was bald by then) and had T-shirts made for everyone in pink camo. A student gave me a purple wig (think stripper pole) and I wore it occasionally. Every faculty member in my building has many initials behind their name so I had lots of medical support at work.
I served one year as interim and two years as stated Dean. I resigned in June and returned to FT nursing program director. This is a 10-month position versus 12 with much less stress. I have had one of those winding roads the past three years and fell into every rare and unusual side-effect in the book-and had some new ones. I prepared by having a fresh supply of a variety of fluids, flannal pillow cases (in my past I had many children tell me it hurt when your hair falls out), a stack of books, and some easy to do meals. I had been told (and this was good advice) if I had nausea and food aversions to avoid foods I really like because if there was nausea with those I would not want them again. It was true for me.
Everyone does the best they can. One day at a time-or half a day-or an hour. What ever works for you. There is a thread here about the crazy things people say to you-I will post the exact name later. But-that helped me laugh and realize it was not just me getting crazy comments.
Be kind to you. Ask questions. Take naps. Drink what you can.
Susan
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Kate,
The thread is The Dumbest Things People have said to you/about you
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Hi to everyone. Had all my labs today with urinalysis if all clear will start TCH Wednesday. Gooseberry and Kdcjjc we are close in starting treatment and Dx. Sometimes I feel like so strong about this and others I just want to curl up cry and say forget it! It's like a huge roller coaster ! I had my hair cut super short today in prep for shaving it. I kind of like the short style. So I was ok with that. Kate welcome I am relatively new here as well and I am so grateful for this group of women sharing and their inspiration! Just knowing someone is here to advise and help means sooooooo much!
SpecialK thank you for the information you share. I am learning a lot
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