TRIPLE POSITIVE GROUP
Comments
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Good news, Camille...although I'm sorry you are having back issues, glad it isn't cancer.
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camillegal - yay for some plain old back pain! I have a couple of degenerated disks as well - not very comfortable and it does light up on the PET scan, but you are right - most of us past a certain age have this problem!
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Cami, congrats! It is relieving to hear
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Cami, so glad to hear your back problems aren't BC-related.
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Camille! So happy to read the news!
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Ugh, I am still up past 3 AM with steroid insomnia after taxol #2 today. Even the baby (at 8 weeks old) is sleeping better than me tonight...
Camille, I'm sorry you're in real pain but that is good news that it's not cancer.
Re: Juicing - After my twin sister was diagnosed with BC in 2008, we both started reading up about diet and stumbled on Kris Carr of the Crazy Sexy cool brand. She is a huge juicing advocate and, while I've come around to a different diet philosophy than her vegan conclusion, I used one of her favourite green juice recipes as my morning drink for a couple years (I lost my appetite for the green juice when I got pregnant last year and haven't gone back yet but I will). She uses principally vegetables, with fruit added only for palatability, so here's the recipe that I really like (this makes enough for 2 people, about 1 liter or 32 ounces):
- 1-2 cucumbers
- 4-5 kale stalks
- 4-5 romaine leafs
- 1-2 broccoli stalks
- 1-2 apples and/or pears
- 1" piece of gingerroot
Give it a chance, you really can learn to like it and then you don't have to eat kale & broccoli!
I have a question regarding herceptin. Since my next will be the third dose, the plan is to shorten infusion time to 30 minutes. But I have read a number of reports from ladies on this site that SEs increased at that rate. Is that the norm or is the 30-minute infusion rate actually tolerable for most women? I would appreciate hearing your experience.
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hello Marlene, I receive herceptin alone in 30 min since last September and I'm ok, a bit tired next day. with taxol together was 90 min first time and 30 min all the next.
now I work full time and I miss just the treatment day.
good luck
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Cami-- Congrats Great news
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Marlene, I recently did a bunch of research on the length of time for Herceptin infusions. The protocol is to start it slowly (90 minutes), and if you tolerate it well with no reactions, they feel comfortable to change it to the 30 minutes. For those with Herceptin infusion reactions, slowing it down appears to help. I have heard some stories that people believe the 30 minute infusion is harder on the heart, but I can not find any studies to back-up this theory, only what people say online. I asked my nurse to slow it down for me. At first she hesitated, but then complied. My last two were at 60 minutes and it has been fine for me. It doesn't hurt to ask. Dosing instructions say 30-90 minutes, so anything in that range is following protocol from the manufacturer. Of course, I am not a doctor so do ask yours! Kiss that sweet baby for me!
Regarding juicing. I think I would love it, but I am carrying extra weight and it doesn't seem like calories I need. I think I am better off getting the nutrients in a filling way.
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GIGIF if you have any questions at all you should call your onc. Your onc should have a NP (nurse practioner) that you can ask questions if your onc is that busy. Don't feel like you're being a pain. We are all in a state of shock going through this. Looking back I didn't have my DH in the room when I met the onc either. She gave me a print out of everything so that's why I didn't forget.
Also some people do really well on the red devil. One of the biggest complaints I hear though is being tired and metallic taste changes. You might need plastic utensils and have to flavor your water with citrus ( lemon, lime, orange etc). But you must drink lots of water when doing chemo. I was on TCH (taxotere, carboplatin, herceptin). I found that exercising (mostly power walking) really helped. The days you are too tired you don't do it but even 15 minutes will help.
YEAH CAMIE best news I've heard all morning. Happy Dance!
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My first Herceptin infusion was done without the chemotherapy meds. It was 90 minutes long. My second was done with chemotherapy meds - the nurse ran it at 30 minutes. I asked for 60 but she waved off my request. The third, fourth and fifth have been done at 60 minutes.
At 30 minutes I felt a little twitching in my chest. It very well could have been psychosomatic but I have not felt it during the 60 minute runs. It makes for a 30 minute longer infusion day but, hey, I'm just killing time so it doesn't matter to me. I will add that I have a mitral valve prolapse, supposedly slight, so I figure the 60 minutes can't hurt.
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LeeA I actually have a very slight mitral valve prolapse. So slight that it was just found a few months before I was diagnosed by my former onc. (She can hear a slight prolapse but couldn't notice a huge dense area in my breast that freak the US tech out. Now you know why she is former).
Anyway as far as I know there have been no issues. Granted I only had a MUGA before herceptin and that's it.
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OK, I have to catch up here, so please forgive my just jumping in off topic. I need some help from the survivors.
So I'm two weeks and a few days post the final chemo (Taxol weekly) and I am worried I'm not bouncing back very quickly. I'm still stiff and sore, my nose is still bleeding and my bowels are a mess. Plus I don't think my hair is growing in at all...can I be permanently bald?
I do feel like I have more endurance when I walk around and I'm off of the anti-emetics. I'm not tired. I don't know, am I just being impatient?
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Marlene, I had most of my herceptin treatments infused within a half hour and I had no problems. My left ventricular ejection fraction was >70% at my last MUGA, so no heart issues. Also, I did weekly taxol without the pre-treatment oral steroids. I just could not stand the insomnia. I did fine without it, just had the pre-treatment steroid IV, but since I got that with benadryl, I slept like a baby. Check with your onc and see if you can go without it. I need my sleep or I'm a grump!
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GIGIF,
Welcome to this thread. Sorry you have to be here, but it is a great site
. I received three weeks of FEC and three weeks of taxotere and Herceptin. When I was first given taxotere and Herceptin, Herceptin was given first, over a 90-minute period. The nurse waited 30 minutes to see if I had any allergic reaction, and then she proceeded to give me the taxotere over a 70 minute time-period. With taxotere, in order to try to keep your nailbeds, a lot of us gals iced our fingers and feet. Some used frozen pea bags, some had sandwich bags filled with crushed ice, taped to their hands and feet, etc. I did the latter, and I did not lose my nailbeds, but they did turn an orange colour. Good luck!!Camillegal, yahoo that you do not have cancer in your spine. Sorry about the deteriorating spinal vertebrae, but that (I think) is better than a return of cancer.
Marlene18, read what I wrote in the first paragraph re: Herceptin (receiving it for the first time). I am going for my 9th session this coming Friday (will receive a total of 17), and since the first time I received it (given slowly over a 90-minute period, I had no reaction), each session now is 30 minutes. I feel warm and tired, a bit like flu-like symptoms in the first 2-3 days, but it does not interfere with my ability to go about doing my daily tasks.
Pbrain, I think it is quite normal to feel really crappy post-chemo, which only makes sense, as your body has been beaten down by the repeated treatments. So sorry that you feel unwell. I finished on Nov., 9, and I did radiation for a month in January and began Tamoxifen on Feb., 14, so I can't remember not feeling stiff/sore for quite some time
. I did not lose all my hair, but 3 weeks after my last treatment, my eyelashes, the last of them, left me, and my eyebrows really thinned out. Again, four months later, I have eyelashes and eyebrows, and my head is covered with hair. I only received Taxotere for 3 rounds. Not sure how long you received the Taxol. Are you drinking lots of fluids and trying to move? I know it may seem counter-intutive, esp., mentioning movement, but I honestly felt better after I walked, even if it was only for 10-20 minutes on bad days. Hope you are feeling better soon!0 -
Pbrain Nope you're doing fine. I remember my 50th birthday was 2 weeks PFC. I felt like shit and didn't enjoy it much. Stiff, digestive issues nail issues worse than on chemo, watery eyes, etc. I do remember though about week 5 the stiffness all of a sudden started to get significantly better! It really takes a while for this shit to get out of your system. Also you are still doing Herceptin so that I'm sure has some effect… it does slow hair growth. My hair always grows fast but on Herceptin it was a little slower. BTW Hereceptin is know to have nose bleed issues. My onc said they don't know why it just does. I had it but was better once chemo stopped. The dry winter Midwestern air doesn't help either.
So while everyone is cheering you on finishing chemo I totally understand the "feeling like crap this is supposed to be over, when will it end" feeling.
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Pbrain, I was really frustrated at how long it took me to feel better after the last Taxol. The effects were cumulative and it's only natural that the recovery time from the last one takes the longest. You will be feeling better soon. The nosebleeds and bowel issues are common Herceptin side effects, though. It is too soon to tell. Be patient with yourself. Love and nurture your body and soul as you gradually find your way back.
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Ah, thanks guys, you are such a help. I met with my radiation oncologist yesterday for my CT sim, and he told me that I had just been through an awful big thing with chemo. He congratulated me on doing so well. I was thinking "what? doing well? are you nuts?"
I'll try to be more patient. Lago, your description is absolutely perfect! When will it end is my new mantra!!
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Thanks everyone, I appreciate u thoughts and as far as pain, I don't care cuz --it's not cancer it's just pain.
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Cami! YEAH!!!! BOO to the pain tho.
I am one of those people who theorizes that 30 minutes might be too fast for some of us. Due to change in equipment and software, they missed my EF dropping the first 9 months of Herceptin.
I felt much more tired when I went to 30 minutes (starting with #2)...but they poo pooed it and rammed it in. I figure it can't HURT to slow it down....so why the rush?
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about juicing - the optimal ingredient is fresh & raw. Use of frozen ingredients has been known to concentrate toxins from the leaves. Rhubarb is one of the items that is best used fresh. I seem to remember that beets need to be fresh, too. Any chance this happened, TonLee?
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Cami, Never thought the words "thank goodness its ordinarly back pain!!" would be in the same sentence, but YAY for no cancer!!!
Marlene, I have herceptin run over 90 minutes. The only time it was run over 30 minutes, I felt like somebody dumped sleeping potion into my infusion. I literally could not keep my eyes open and came home and napped for hours. I recall my son, who is an EMT, kept coming into my room saying "mom, are you ok??" cuz I never usually nap!! I also got a bad headache from having it run so quickly. At the next herceptin, I asked that it be run over an hour, which they did. I still felt tired (I literally could tell when the herceptin began to enter my system, because I started yawning!!) but not as bad. Now, when it is run over 90 min, I'm still a little tired but I can function very well afterwards, and don't have any headaches.
PBrain, I am a few weeks ahead of you, and I can report that it does get better!!! I also wanted to feel better as soon as my last treatment was done, but it was unrealistic, because the last treatment was cumulative to all the others and needed time to run its course. Its very frustrating, because you just want to feel NORMAL again! Well, it does happen, maybe not as quickly as we would like, but it does happen. Keep the faith!!
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ONC did write it all down for me. TAC X4, then just T X2, then Herceptin X2 all 3 weeks apart. Then radiation, then the pill. I am wondering if I will be wiped out from the chemo? My husband and I are very active and love the outdoors. Spring is just getting here and I will hate to miss everything. I also work FT, but it is a stress-free job. Thanks for all the replies. Pretty sure I'm going to love this site. Positive thoughts and prayers to all of you !
PS--Had my IV port inserted this morning. Not as bad as I expected. Sore, but not terribly.
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Thanks again for all the responses. My hubbie was in the room, but he was in shock mode too. We just weren't expecting to go down the chemo road. I have enough info for some serious research now.
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Got a question here for all you that are done. Now that I am totally am done as of today I will see my doc every 3 mo for exam and blood work is the blood work an normal thing to do?
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Sue,
Nope. I use fresh raw organic produce. Of course the beet was the size of a baseball.
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ang - yes, I had blood work at each 3 month appt PFC.
marlene - I always had Herceptin run over 90 minutes during chemo. When I went for the first post-chemo Herceptin only infusion they did it in 30 minutes and I had a ton of joint pain. I requested the remaining Herceptin infusions be run over 90 minutes and had no further problems.
pbrain - you should see improvement at about 6-8 weeks, then steady improvement following that. It is hard to be patient when you want to feel better, but it will happen.
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ang My onc stopped doing blood work once chemo was done. The next time I had blood work was from my PCP when I got a rash… he did it just in case. My white counts were low but not bad. My onc doesn't trust tumor markers so she doesn't do them. After the first year I went to every 6 months (seeing either my onc or BS). After 5 years I will see one of them every year. To be honest I rather just see my onc. My BS is about to retire. He has cut back so I don't know if I will see him or his partner in the fall.
Most people don't continue seeing their BS.
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There are so many differences I've been done for a while I still go every 3 months and get blood work at least once a month. plus other test, but generally I think it starts 3 months then goes further apart each time. All I know is I should be invited to my Drs. birthday parties I see them all the time. ick
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Lago, if you see BS & onc every 6 months, do you also see PS anymore now that you are done with reconstruction? I'm curious because I still have the tattooing left to do, and am wondering if my PS just cuts me loose after that? I kind of like seeing all 3 drs every so often since I'm one to keep a running list of questions.
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