TRIPLE POSITIVE GROUP
Comments
-
I would love to ice fingers and toes, since I got some numbness and tingling with this round of AC. (Adriamycin/Cytoxan). How do you do it? Any links?
I'm off to eat dinner now (a blessing after 4 days of fasting!) but I'll check back in with details on the Penguin Cold Caps.
0 -
Windlass - Happy eating!!!
0 -
Yay! Food was wonderful, thanks.
Cold caps were rough, esp. since we lost the black velcro strap that keeps everything tight, so the hair at my temples did not stay cold at all. The dry ice was a pain, and getting the temperature right was nearly impossible. But we persevered right to the end.
I am realy bummed that neither hospital I have worked with was willing to accept a FREE $1800 freezer that would have kept the caps at the exact temperature, and instead I had to drive an hour round trip to the dry ice place, buy two big coolers and an expensive thermometer, then put my husband and two friends through6 hours of stress.
As for the A/C, you gals who sailed through chemo must be superwomen. I was DOWN for the count the first night with unbearable nausea, then on day two I felt like I had been hit by a truck and then dropped off a cliff. I did not speak or emerge from bed for 24 hours. Today I felt so much better and had a huge appetite and much more energy.
And sorry to be gross, but also today my bowels returned to normal, after days of constipation and quite a bit of cramping yesterday. I am not sure what the fasting has done, but I do seem to be doing pretty well today.
Oh, and I got a (mandatory at my hospital) Neulasta shot today, since I am doing dose-dense chemo every two weeks.
0 -
nora-az: Did you and your husband ever go to that fancy dinner after all? If so, what did you wear? I am dying to know!
0 -
You might lose some of that hair around the temples that stayed warm windlass. I lost mine there too...but the other hair was long enough to cover so it was never noticeable to anyone but me.Its all grown back in now...about 6 inches long a year later. I used an ace bandage to wrap around to tie the caps down since they didnt give me an elastic velcro strap. It worked great. The caps were very worth the frustration of using them. The way I figured it...chemo day sucks no matter what...so why not just add the caps to the pot ?
I iced with the taxotere part of the infusion. I added bags of frozen peas to my caps cooler and just kept them across the tops of my feet and on my hands for that time period. I had tchx6 and only had very mild tingling in my toes occasionally and nothing ever in my hands.You can also suck on ice chips..helps with keeping any mouth sores at bay.
I am impressed with the fasting you do. I do juice cleanses..where I only drink organic vegetable juice about once every two weeks. I need to do it more often. I feel a HUGE difference in my body when I stick to it!
Redinrah, I have a port scar incision line too!! Boo! I think it becomes important for each of us to know our own lumps and bumps..so that we can immediately pick up on any changes. My scar lines feel tight..not lumpy.
0 -
Speaking of port scars, my port itself is barely noticeable, but the scar is huge! It's at least 1.3 inches. Fortunately, it's fading fast. I was so glad to have it on Wednesday. I hate IVs with a passion and would have been crying by the end.
Geewhiz: Thanks for the frozen peas trick - I'll try that next. Do you lose sensation with A/C or just Taxotere?
Also - I am getting a sore throat tonight. Is that normal or should I call the onc? (I am two days post A/C tx)
0 -
Hair is still growing in. Still not used to the black eyebrows and hair (with gray). If I have time I'll probably post in the hair forum this weekend or Monday.
BTW I do have a scar from my port. A little is sticking out but most of it is covered by my shirt. This is an older photo. The scar is healing and getting even lighter now. I bet it's almost gone when I finish Herceptin in September.
0 -
Hi Ladies:
I haven't been here in a few weeks and trying to catch up on all the wonderful chit-chat.
I've had one chemo treatment on 28 March and it isn't going so well and I spent all day Wednesday and again all day Thursday in the ER with tremendous heart palpitations. Wednesday's trip showed very low potassium and magnesium and I got a drip for the magnesium and potassium pills plus beta blocker. Worked fine until I got home...so back again on Thursday. Blood work fine but the PVC's still rampant.
Now, my oncologist says I need a release from a cardiologist before I can continue Herceptin. Looks like I may not get the wonder drug and that really scares me but probably no more than having heart problems. PVCs are still here but they tell me they aren't dangerous but they sure are annoying.
0 -
Arlene - Sorry to hear what an awful time you had with Herceptin. I had to quit because it gave me congestive heart failure. Two years later and I still am not back to normal. Good luck.
Juli
0 -
Hi Juli:
I was curious if anyone else had had this problem. It sounds like you've done fine without the Herceptin. How many TXs of Herceptin did you have before you had to stop?
Arlene
0 -
Hi, Arlene: Sorry to hear of your troubles! What drug did they give you?
0 -
so sorry to hear of the heart troubles! My echo showed me at 60% while doing chemo with herceptin, am now just doing herceptin every 3 weeks and my echo improved to 70%. so was it the chemo or the herceptin? Or the fact that I feel so much stronger since being off chemo? I was walking a lot in prep of surgery to get stronger, so maybe that helped bring the number up
0 -
ArleneA hang in there. Make sure you explain your feeling to your onc and cardiologist that you don't want to give up on this drug.
But also remember that just because you are HER2+ doesn't mean you will automatically get mets. Small node negative tumor is really in your favor:
(from Dr. Susan Love's site)
My tumor tested positive for HER2. Does that mean my chance of recurrence is much greater?0 -
I woke up sick today with a bad cold. Just three days after my first AC chemo! Yikes.
Sore throat, nasal congestion, achey, blech. And no white blood cells to fend them off. No fever though, thank goodness. I'll call my oncologist again if I get above 100 degrees.
0 -
Hey Arlene Stay Strong, I agree with Lago stay form with your Onc. I had a question to anyone has experienced delayed SE? I had my first TX 3 weeks ago and was down for about 3-4 days. Then all of a sudden yesterday I got the metallic taste thing and extreme fatigue. I am concerned because I go again on Monday for TX 2 and going in feeling bad & coming out feeling worse is kind of scary.
0 -
nmoss I never got extreme fatigue but I would tired much more easily on chemo. As far as taste changes. I never got the metallic taste thing but my taste changes would happen 1 week after infusion. The really bad SE had subsided but then I would have tasted changes for a week. I didn't really notice my taste changed till the 3rd tx. Did I tell you about the new gum story…
After my 2nd tx I purchased a new chewing gum, new flavor from Costco. I tried it and was very disappointed because it had this strange after taste. Well what I didn't realise is I had some minor taste changes already. After chemo the flavor was just fine.
Just let your onc know. This is strange stuff. Everyone reacts differently. As I have mentioned my hair color came in gray AND BLACK including my eyebrows and I had that rare every nail on my feet and fingers lift but never any nausea. Everyone is different.
0 -
Arlene, so sorry to hear about your heart. Take care of yourself. The fact there was nothing in your lymphs is encouraging....there is a woman here (impositive) who did not take Herceptin, and had dirty margins on her lumpectomy that she let stand...she didn't do chemo either....and she's NED a year and a half out.
Nmoss, yes, I had delayed side effects...meaning they came the week before my next big TX. Mine were nose bleeds, fatigue, neuropathy, and intermittent taste changes.
Windlass,
I'm sorry to hear you aren't feeling well. You seem to have taken this first treatment pretty hard. I spent 5 days after my first in the hospital (wasn't on Neulasta then) and thought, "Oh no. I won't survive 6 of these if the very first one put me in the hospital!!" But, turns out, that was probably the worst one.
I would encourage you to do your own "experiment" to see if fasting is helping or hindering your chemo and recovery. Perhaps next time you could eat as normal and see if you're stronger?
I only mention this because I was not getting enough calories before and after my first treatment, and for me, it was the worst. I upped my calories (by 200 a day) and BOOM! I was stronger and felt better. (Of course there may not be a correlation because I also started Neulasta.) Anyway, just a thought. Hope this finds you feeling better.
0 -
Arlene - did your onc require a baseline echo prior to starting Herceptin?
Windlass - are you getting Neulasta and have you had a CBC to know what your WBC is? If you are receiving Neulasta and have had only one tx you probably still have decent WBC at this point.
nmoss - after 3 tx the SE have been slightly different from each other (even the same SE's, some better and some worse!) and have come at different times in that period between tx's. I realize this info is not that helpful but may make you worry less if they crop up at different times!
0 -
I got a Neulasta shot yesterday, so that should kick in next week. I may try skipping the fasting next time and see if anything is different.
0 -
Hi Ladies and thanks for all the positive comments. I am on TCH. I did have a baseline MUGA scan prior to my first treatment and it was in the high 70's but the Echo showed it lower but my oncologist says there is almost always a difference between the MUGA and the Echo. I see either the oncologist or the NP Monday so we'll be reviewing it closely.
BTW, I had my first Neulasta shot last Monday and barely a SE from it (assuming if I was going to have one, it would have already occurred).
NMoss - I understand your concerns about going to Chemo #2 feeling badly but your bloodwork, I believe, will determine if you have the TX or not. Hang in there.
Talk about taste - yikes, there isn't anything that tastes good to me and that is only after TX#1. I have to really force myself to eat. I've not experienced the metallic taste and my NP says if I didn't get it after TX#1, I probably won't but from what I am reading here, that doesn't sound exactly right!
0 -
Windlass: I had my Neulasta shot last Monday and my WBC was 1200, on Wednesday, it was 1900 and by Thursday it was up to 6200 so that shot seems to work really fast! You should be better soon!
0 -
BTW use plastic utensils if you get the metallic taste.
0 -
Hi all,
Been a while since I was on here, after having trouble with TCH therapy. They started me on ACx4 therapy and I've completed two of them with minimum side effects. Since I already have PSVT's I've had some heart tests done lately that say, so far, it hasn't damaged my heart. I'm kind of at odds with something. My oncologist said at the beginning of AC therapy that I'd have four total treatments of AC, but after talking with him and reminding him I made it through one whole treatment of TCH before having an allergic reaction my second time around, he said he would consider three treatments. I've cornered him a couple more times about how many treatments and he said he was waiting to see how I handled each treatment before deciding. This past week when I had to go for WBC a week after treatment, he said he was leaning toward three.
They totally removed my tumor in November. My first mammogram, age 43, showed I had a fibroadenoma, usually just watched by doctors, mine insisted a biopsy which showed LCIS so he wanted it out. Came back with a 8mm ILC totally incased inside this fibroadenoma so clear margins even within the fibroadenoma not to mention the extra 1/2 margin around that that they took out. Next the sentinel lymph node was negative. Tested both hormone positive. Tested negative two times for HER2 but he insisted that we get a FISH test and it said HER2 positive. Obviously then we knew I needed chemo, Herceptin and Tamoxifen. His recommendation then was TCHx6, radiation,HerceptinX11 then Tamoxifen. One TCH with minimum side effects, but second ended up in ER so that was discontinued. Now he recommends ACx4, radiation, Herceptonx17 then Tamoifen for 5 years.
If given the choice between 4 AC and 3, what would you do? He knows I'm scared to death about the heart issues of both AC and Herceptin, but he says when you start one therapy then change to another it's like starting over. You have to take the full recommended treatment of the new therapy, which would be ACx4, but now he's leaning toward 3. He said that if I only did radiation that I would have a 70% chance, my cancer would never come back, but if I did chemo and all the other things listed above those chances would be in the 90's.
0 -
achpurple - I think your case is unique and another opinion would be called for. Did you do the second TCH or have to stop in the middle? What is PSVT?0
-
nmoss: The one and only TCH I had gave me no SE until around two weeks. Woke up in the night with nose bleed one night. Then for about 1 1/2 days I couldn't stand the taste of any food or drink, not a metallic taste to me, just the flavor of everything was like it was super concentrated or something, even water. Thank goodness it didn't last long. Then one day I had a funky hearing issue just out of no where, like I couldn't completely hear anything. Once again, short lived. Everybody had told me that my head would get tingly about 11 days out, then my hair would come out within 24 hours. Not exactly, about 25 days out different parts of my scalp just ached, like I could feel every hair follicle and when my hair moved, it hurt. Only then did it start to thin and continued to hurt until I just shaved it off. It bothered me more as it was coming out and thinning than it did after I shaved it. I still don't wear a wig, sometimes a hat when it's chilly outside. Those were my SE.
0 -
I started the second TCH and about 15 minutes into it, had the reaction. PSVT is paramoxal superventricular tachacardia - basically a really fast heartbeat that comes for no reason. I've had them for some time before cancer treatment. That's why I worry so much about what any kind of therapy will do to make it worse.
0 -
Arlene - I had 11 weekly Herceptin (the 1st 8 with Taxol) before I had to quit.
Juli
0 -
achpurple I would go get a 2nd opinion. Just to add there are many women who do 4 AC followed by herceptin. At one time this was the only way they gave Herceptin. Yes the risk of heart issues is a little higher but plenty of women have done OK. They will be watching you, as you will be watching for symptoms too. Not exactly sure what your stats mean.
BTW I would get nosebleeds 1 week after chemo. Both my onc and I thought it was Herceptin. I still get a nose bleed 1 week after herceptin only but not as bad.
0 -
I agree with pps - I think you should get a second opinion. Do you have another cancer center near you?
0 -
Thanks Juli. You got so far!
0
