Taxotere, Carboplatin and Herceptin
Comments
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Ellenfitz...I started to lose my hair on day 16 after my first treatment. It took me 20 minutes to comb through all of the matted hair that day after I washed it. I kept what I had for about a week until I got a wig. Side effects are different for everyone. You and your Mom can get a lot of good support from all of us on this thread.0
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Made it through the day, it was not crowded today for some reason and I got right in. I did have to wait a while for my favorite IV starter to come back from his lunch break though. I was not even his patient today, but he makes exceptions to do my IV, my veins are so difficult he has to wrap a hot cloth around my arm and taps and feels all over my arm to find a vein he can use..It took a while, but he got it and it didn't hurt and he got it on the first try. He talks to everyone and makes us all laugh, but he is really good at his job. The doctor put the order in for the port placement, so probably in 2 -3 weeks I will have it.
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Cakelady...Glad to hear you made it through ok. How does it feel knowing this is your last chemo!!? woo hoo!0
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Ellenfitz: I began losing my hair by the fistful and it was driving me crazy by the 12th day . So my adult kids and their SO's came over and we had a shaving party. I suggest you do the same with your mom. We had food and wine and I didn't once get emotional over losing my hair. We laughed the entire time and then everyone had to try on my new wig--even the dog! We had a wig party too! 3 of us went out and they helped me try on wigs of all colors and styles. Another fun day. Never, ever pass up an opportunity to party!
Cakelady: Hope you get that port in ASAP. You'll love it! Your IV guy story reminded me of the time a phlebotimest and I started talking and LAUGHING about our ex-husbands. I've never had a needle hurt so much, but it was worth it!
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Ellenfitz: I just started losing my hair on day 15, not major but enough to know that it was starting. Today, day 16 is worse but not sure when I should shave it all off. It comes out when I run my hand through or as I took my shower this morning but don't find that it is just falling all over the house....yet!!!
Denali: A shaving party sound like a good way to make a hard thing go a bit easier! Not sure if shaving the head means taking it down to the scalp or leaving something. Any suggestions out there from those of you have done this.
2nd TCH on Monday and interested on how that one will go with side effects and all!!
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blest: First tx is usually mild, but unfortunately as the chemo builds up in your body you begin to get the fatigue, nausea, etc. Remember they can tweek your meds to keep the nausea away. I began with Zofran that was wonderful for most but did nothing for me. When they switched me to Emend I never had any more nausea problems all through tx's.
Wendy: I had and still have bad veins, I love my port every tx, even now for Herceptin. SO glad I got it. After a few test before tx the tech's would tell me, "lady you need a port". They were so right.
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Christy: It was really nice knowing it was my last chemo.... I am feeling fine so far. How are you? When is your first Herceptin only? Do we have to do a blood test before each Herceptin like we do before each chemo? I am not clear on that. I have to do blood tests about every 2 weeks because I am on Coumadin, so I try to make the pre-chemo test at the same time., since I only have one vein for them to draw blood, I don't want to get stuck too many times.
Cupcake: I wish I would have gotten the port in the first place, but the doctor said the PICC line would be fine, little did we know I would get a blood clot from it. So now I will get the port for the Herceptin only until March, but the doctor said there is still the same chance of getting a blood clot with that. I will have to stop the Coumadin long enough to get the port, and then go back on it for and extra month or so the original clot has had enough time to dissipate.. hopefully I will not have any more problems. Have you ever had blood clots with your difficult veins and have you had the port for a long time?
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Thanks to all of you for the encouragement. She lives in NJ, and I am in Chicago - so I am going back tomorrow night to be with her for the first treatment. Wish us luck! I will come back and update.
Again, I appreciate all your input - and will keep all of you in my thoughts. Good luck!!
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Cakelady...My first herceptin only will be on the 27th. The onc wants me to have blood work and then see him that day, but for a follow up from the last chemo. From then on, I won't get blood work unless something comes up. I will have another pet scan, muga scan and ecg scan that week too and will talk with the rad onc. It will be a busy week for me. I have had terrible heartburn the last couple of days. I never had it before chemo and am hoping it will go away on its own now that I am done. I hope your SE's are minimal this time!! get plenty of rest!0
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I'm getting my life back and what a great feeling!! I drove from Idaho to Calif. by myself! I have driven this road at least 3 time a year for 30 years but really had to talk myself into doing this time. Cancer sure gives us some strange fears. It took me about 4 hours longer because of the stops and friends calling to see how I was doing but I made it!! My daughter is having my 1st grandkid and started labor early, which stopped when I got there ( isn't that the way things go
) and the rad. Dr. moved my appointment back a week so I it seemed like the perfect time to go. On the way back I stayed in Vegas and was trying my luck on the penny slots, a lady sat next to me and asked if I had cancer and what kind. As we talked she said she had cancer 5 years ago; a friend had given her a good luck coin and now when she sees a woman with cancer she gives them a good luck coin. As she was leaving she gives me a breast cancer prayer coin, I go back to putting a penny in the slots (not a big time gambler) and win 208$. I am taking this coin with me to all Dr. visits!!To all of you new "campers" good luck with the chemo, I had every side effect you could have and some that aren't even listed!! and made it through! I start rads tomorrow and hope that will go smoother
Have a great night and may your side effects be small and your hair grow fast!
Karen
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Dear Ladies,
Bravo, I made it thru my third RT session today with flying colors after a bad anxiety attack on the first day (which included a half hour of planning),
I concentrated on the kind nurses there and shut my eyes tight when I got on the dreaded platform, and just count 1 to 60 when the machine switched on. Mine lasts about 62 to 65 seconds, depending on how fast I count really.
I want to say thanks to everyone who have been supporting me. I have an inherent fear of machines, especially huge intimidating ones. i don't even drive now because I fear I will lost control of the car constantly. So, after thinking it thru, I now understand why I had such a hard time overcoming my fears for RT compared to chemo, which I did without any trouble.
Hope everyone is doing fine, jkrml, I was diagnosed on the same day as you, and have the same markers too, except that my tumour was 2.6cm, thus the 2a staging. I finished my last tch in mid June, and started on my rt just three days ago.
I wished I was doing the accelerated course, which I understand is offered routiinely now in Canada and the UK. Most do 40 grays spread out over 16 days or 2.5 grays daily, compared to my 50grays over 25 days (2grays daily). I will have an additional booster for six days too.
Cupcake: what is the brand of aloe gel that you use? I found one in HK made in Canada under the Jameison label, but didn't like it as it had colouring and a host of other additives despite claiming it's 99.9 percent aloe vera. I tried on my own home grown aloe and it feels just great!
Hugs,
Ipohgirl.
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jkcrml - I too have experienced some odd phobias since being dx'd. I guess we just have a different outlook on life now. Congrats on getting your life back. How about that grandbaby?
Ipohgirl - Glad RT is going smoothly for you now.
Lisa
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jkcrml, I loved the story about the breast cancer good luck coin. And you're finished with chemo! How great!
ipohgirl, a radiation tech at my MUGA scan told me that fear of big scary medical machines is very common. She said that lots of people have to bring someone with them to talk them through procedures. I made it through my first one but with a high level of anxiety. Next time I'm taking someone with me for moral support.
Becky
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I HAVE A SEROMA ALSO AND MY SURGEON HAS DRAINED IT FOUR TIMES IN HIS OFFICE. I GO IN WEEKLY TO HAVE IT DRAINED. I HAD FOUR LYMPH NODES REMOVED WHEN HE DID THE LUMPECTOMY AND HE SAID HE PROBABLY SHOULD HAVE PUT IN A DRAIN AT THAT TIME. I GO IN TOMORROW TO HAVE IT DRAINED AGAIN BUT IT DOESN'T FEEL AS BIG THIS TIME SO MAYBE THIS WILL BE THE END OF IT. HAS YOURS CONTINUED TO FILL UP? GOOD LUCK TO ALL
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Well, I have finished Herceptin #3, and am now 9 weeks post chemo. I do have some hair, but not enough to go without a hat or wig--thought you might like to see my picture. I am doing well--had my tissue expander exchange surgery 4 weeks ago and am still a little sore but I'm pleased with the results. Keep hanging in there--it does get easier. I read these posts every day.
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Helen: Congrats on your finish....only 3 lucky you. I will be getting ready for the expanders after the cruise. Skin still pretty sore yet though.
Ipohgirl: See now sweetie ma ma cupcake told you it would be alright. Your on your way now....I used Jason pure Natural, Organic Aloe Vera I got from a health store. Your plant is just as good and glad it is working well for you.
Wendy: I have had my port for a year now and never had any problems with it outside of once they had to put something in it to move the things away from the hole. I know I don't explain in dr terms. It was just pulling some stuff back in the draw back and clogging the port for a blood draw return. I know that doesn't make much sense but it was no big deal in fixing the problem.
Karen: I am with you in time to go back to our old life...much wiser though. I have been having some bone pain from the Arimidex and had a bone scan today, but , outside of Arthritis, it is ok and no cancer. That was a relief. I think for awhile it will be common , after what we have been through, to have some fears when we feel something strange.
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Cupcake: I have had 3 Herceptin only treatments, but I still have lots to go--through January 2010 unless they decide to continue Herceptin for 2 years--which has been discussed.0
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Christy... I am doing fine so far, except for a stomach ache last night, and some heartburn too. They gave me Pepcid tablets a while back for that., but I do take Tums also, for quick relief. I have never had the PET scan, I have had one MUGA, but nothing else. Doctor told me last week I don't need radiation. Just the Herceptin til March and the Tamoxifen for 5 years....and when I am ready I need to think about getting tissue expanders to start my reconstruction... from what I read here I think those are really not comfortable!
Cupcake. Yes I do understand about the port clogging thing, your explanation was fine. I am more afraid of blood clots in my particular situation.
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duneoaks - Do you know why they are thinking about continuing your herceptin for 2 years? Your sig says you did not have any positive nodes. Just curious. Lisa
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Dear Ladies,
Met a fellow TCH patient during RTtoday who had a marvelous head of hair growing of about 1 inch. She looked about 60 (she said she was 57) and I asked her what else she took during her TCH to acheive such good hair regrowth and colour (it was 95 percent black, almost looked like she dyed it). She said she took the Japanese supplement called Yunzhi which is very popular in Japan and China.
Me? I envy her dark head of hair, but have no guts to try it as my ALT levels have not returned to normal yet ( was in their 20s, then 38, 78, now back to 35 last). I did not try ANYTHING else during my TCH for that matter since I was worried how they would react with my treatments like Herceptin which I am paying a lot for.............I wonder whether any studies have been done on these therapies, but apparently many Asians use it concurrently. Anybody heard about them from their TCM docs or others?
Cupcake: Thanks for telling me about the label. I researched the UK forums and apparently the humble aqueous cream (my two babies used it before) is prescribed widely for RT there. I asked my doc for a prescription today.
Becky: Thanks for sharing about the fear of big machines. The ones they use for RT reminds me of huge robots like the ones in Terminator! I was knocked down by a school bus when I was 10 and have a phobia of big machines since.
Cakelady: I am concerend why your onco did not ask you to take a pet scan since you have a positive node. Personally I would ask for one just to be sure. Also, my onco would have ordered radiation for your axillary (armpits) since you are not node negative. Just sharing my concern, hope you will not find it offensive. Over here, everyone who did mastec does RT too,
Hugs,
Ipohgirl.
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Ipohgirl, where do you live? Just wondered where "over here" is?
Duneoaks, I'm interested in hearing why your Onc is thinking about 2 years of Herceptin, too. Please fill us in!
Becky
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Wendy: I used Pepcid AC chewable, although a little pricey sure does the trick instantly. Pepcid AC works in about 15 minutes. Having reconstruction is purely up to you. Many women say they have had enough and elects not to have reconstruction. Also you can have it many years past chemo. You do not have to have it right away. Its not a free ride there is some pain in doing it and two surgeries I believe. One to put it in and one to put in the implant and fix the other breast to match. Correct me if I am wrong ladies.
Helen: I have 5 more Herceptins to go. That will make me one year out plus a few I missed along the way. My onc said there is not enough studies yet to see if extending it two years works. I am hoping they approve that injection that will train the cells not to accept Estrogen. It is in the study stage. Having the Herceptin to me is like a safety line knowing it is there protecting my body from the cancer getting to the estrogen.
Iphogirl: Just remember that anything you take by mouth to check with your onc before hand. Wonderful if it works, but I would rather not have long beautiful black hair if it means in my casket. Sorry to be so blunt, but just want you, and everyone in here to be careful of taking anything your onc doesn't know about. Your onc is your guide. If he or she says it is ok then it is.
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Wendy....I have had my tissue expander for 5 months now and yes, it is very uncomfortable! have gotten used too it. But, I had to wait to get through chemo and now radiation before exchange. But, since you are done with your chemo, when you have your expander put in, the PS will do fills for about 6-8 weeks after and then you can have your exchange. You won't have to wait like I am. The fills are uncomfortable too, because it makes it really tight for about 2 days after.
Iphogirl...I have one node positive and my onc wants me to get radiation in the axillary and superclavicular area. I agree with you on that for Wendy.
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Lisa and Becky: My onc just mentioned at my first Herceptin only TX that there were studies going on right now to determine if Herceptin for 2 years was more beneficial, but nothing has been determined that I know of. Of course we will do what we need to do to fight this disease, but I hope I don't have to keep up these TXs and keep in the port for another year and a half. I would be interested to know if any other onc are saying this.
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Hello everyone, just had my first tx and it took 6 1/2 hours!! Blood work, magnesium low, got a bag of that then all the other stuff. Felt fine, had 1/2 sandwich and smart water while I was there. I was scared to eat cause I didn't want to lose it but I had no nausea. Started a heavy period same day as treatment so I had cramps to deal with. I'm 56 already, where is the off switch!! Should not be stealing teenage daughter's tampons still...anyway, love Ativan, helped a lot with sleep. I notice my coffee is not as enjoyable this morning, may need to switch to tea. I get my neulasta shot soon and then will see how I feel. My daughter and sister are both amazing, I am so grateful for them, little mother hens.. So one down, 5 to go. I have hope. And thanks to all of you for your support and wisdom.
charm
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Okay I will ask again about the PET scan and about radiation, next time I see onc. Lisa 1964 did not have radiation either if I remember correctly.
Yes I think the reconstruction is 2 surgeries... one for the expanders and one for the exchange. Mine would be the same for each side since I had bilateral mastectomy. I am in no hurry to do it , just want to know what to expect.
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Kauaicharm...You made it through the first one YAY. I'm glad you have hope. Thats what these ladies here give you. Your periods will likely stop soon,,, Mine and ccbaby Christy had ours stop after the first treatment, and they havent come back yet. We'll see.0
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Charm, I kind of know how you feel. I had a period on my 55 birthday - was still having them somewhat regularly at that point. Then I didn't have any until just after my 56th birthday - because that was after a year without, I had to have an endometrial biopsy because unexpected bleeding can be a symptom of uterine cancer. I was waiting for the result of that biopsy when I had the mammogram that led me here. Fortunately the endometrial biopsy was negative. It was just one last period and I haven't had any more since then.
Chemo may cause you to go into menopause. It's called chemopause and the older you are, the more likely it is to be permanent.
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Hello everyone, I haven't posted in a while but try to read and keep up with everyone.
I think this is the best thread for me because I am having the same sort of treatments. It's so nice to know I am not alone! Although, I am sad that any of us have to be going through this.
I had my third treatment last Thursday. It was delayed for a week because of low platelets and haemoglobin. Had to have transfusions. I was a bit of a basket case the week before and am wondering if the low counts are to blame or just the chemopause. I was quite surprised about the transfusions etc. I get the Neulasta shot everytime (maybe that's for white blood cells). Anyway, I was disappointed because of the delay. I have to psyche myself up for a treatment so it was a big let down.
My side effects seem to be a little different every time. The first was definately the worst. I started my period at the same time (none since) and had bad diarrhea. Not a good combination. The second was constipation - four days, and mouth sores. Not too bad for anything else. This time, I am really nauseous, diarrhea and just plain sickly. I hate it. Also, the disgusting slime mouth. I am on Day 8 so hopefully I'll start to feel better in a couple of days.
At my last treatment they put it through faster and I am wondering if that has made a difference to me being so sickly. I'm going to ask them. It doesn't make any difference to me how long it takes. It's still a whole day for me (2 hr drive there and back). So maybe slower is better. Did it make a difference for any of you?
I have a PICC line too. What a pain to have to try and keep dry all the time. I haven't figured out a way to do that yet. My bags and tape and stuff aren't working! Oh well. The power port is probably a bit better.
I had an appt. with the Radiation Onc on Monday. Really nice lady. I live in a small town about 3 hours from Edmonton and Calgary. Kind of in the middle. In the beginning I opted for treatment in Edmonton and am I ever glad I did. She told me that I would be having 20 rad treatments after the TCH. But if I had been having treatment in Calgary I wouldn't be offered any! She said that they would have considered me borderline with having only one positive node and my age (46). Is that old?! Anyway, she is going to zap the nodes in my chest and around my neck I guess. Thank God. I have a young son (he's only 9) and I'm not ready to go anywhere yet. I want to get all the treatment I can.
One more gripe (sorry ladies, I am feeling kind of down right now). The doctors where I go for my treatments are going on holiday at the same time so my #4 might be postponed. They're having trouble finding a replacement Dr. I couldn't believe it. Is there not a reason these things are timed the way they are? I was late getting started I think. So it worries me. I've already had one delay. It's so frustrating having to put our lives in someone else's hands and having absolutely no control over it. And I lost a lot of my hair so had it buzzed. Can't bear to wear a wig yet. It feels so foreign to me. It's all minor in the big scheme of things I guess. Still can't wait for it to be over. At least I can say I'm half done with chemo.
I think of you all often. And I see there's a few new ladies - hope it goes well for you too.
Love and prayers, Anji x
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Anji...They gave me all of my treatments slow each time because I was allergic to Taxotere. For me, the side effects were always the same with added ones each time. It seems like each treatment made each side effect a little worse too. I think that stuff accumulates each time. Congrats on being half done!0
