August 2010...anyone starting chemo besides me?!
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Lisa,
Yes, the SE of the Zolodex shot are here...I wake up in the middle of the night... Hot flashes and I am moody...The bleeding has started; right after I felt the chemo leave my body... My cycle is not due...
The reason I was given the shot was that I have 3 uterine fibroids... This is the issue I went to address at the GYN visit, where the lump in my breast was found... TMI every month I use 70 sanitary napkins because of the fibroids... Since CANCER is top priority, I will not be having the fibroids removed until I have reconstruction on my breast... My breast surgeon, medical oncologist and GYN believe the Zoladex shot serves a dual purpose... It would assure I would lose my period (after a couple of shots uuuggghhh)... They said chemotherapy do not stop everyone under 40 cycle... Lastly, I am Estrogen+ and it will help block estrogen...
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lisa - that is good to know. I remember hearing something about some of the antinauseas being super expensive.
Not crossing that bridge yet -- but did stock up on ginger chews at the whole food store today just in case......
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Calamtykel, I was worried about the meds two. Since all but one were generic my regular co pay of 10 applied. Emend is not generic so 2 of those puppies were 55.00. However, I think the regular price is about 125 each. This is also what they put in my iv today for my FIRST chemo. Girls it went better than expected. Spent most of my time reading and on the laptop. Free snacks, etc. Started at 10:30 finished about 4:00. Tired but I think from sitting all day. Food doesn't look good, but is that just subliminal thinking? Not nearly as bad as I had anticipating. Hope the chems are fighting. Beth
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Reminder of pharmaceuticals:
If you all are having trouble with the copays or just would like it cost you less, you want to try to contact the manufacturer, tell them your situation and they will perhaps give you a discount or send them for free. You might get them for free seeing as they know we are chemo patients and you won't need them forever.
I have worked with the elderly on-and-off for years and this is why I know about this little trick! Every little bit helps, girls!
Liz0 -
Hi everyone, I'm an August chemo-ite too! Had my first July 31st and my next Aug 20. No fun, but doable. First week after my TC just felt like the worst flu/hangover EVER. But tonight, (day 14 after treatment) is interesting....my hair is falling out!!!!:( For some reason, I thought I would break the mold be the first to NOT lose her hair. Silly me. So tomorrow my 4 year old and 6 year old will get to "cut and style" me and then my husband will shave it all off. I hope I'm strong, I need to be for my kids.
RACHEL- did you let your little guys cut your hair? If so, how did it go? (ps I'm up in Ottawa, eh..)
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Hello everyone, I enjoy reading all of the stories, comments, and advice here. Thanks. I no longer have a start date. I have a nasty burn (on my fake boob) that is healing and it has delayed everything. Don't ask. So, no port Monday, no chemo Tuesday, and no FUs (Fill Ups) of the expanders until healed. I will update my start date when I know it. It's a catch 22; I'm happy to not have to go through it and sad that it is delayed and will now run through Christmas, boo. I don't have chemo brain (yet) but I do have research overload. Healing and thankful thoughts to you all.
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Hi Sweeney--Glad to hear that your first treatment went pretty well. I am due to start tomorrow. I haven't done anything about the hair right now. I think that I will either get it cut off next week or week after. I'm not so sure on the kids doing it now.....we'll see when we get there...not sure if I am brave enough or not. My Doctor told me that he thinks my hair will start dropping about 2 weeks after--seems like your schedule. I'll keep you posted. Take care, Rachel
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Hi everyone,
Just completed my 2nd chemo of T/C today. I got the same nurse as last time and I was thrilled! I don't have a port so I need a nurse that can find a vein easily and Mary's my girl. My husband came with me this time, my mom came the first time. I was given an antivan (for anxiety) and 3 Zofran (for nausea), these were oral. Then she put a bag of Saline in my IV while we waited for the Cytoxan and Taxotere. She did the Cytoxan first and then the Taxotere. It took about 3 hours and I had no immediate SE's. I drank two 16 ounce glasses of water during the treatments and had 3 frozen fruit bars to try to help with the mouth sores (I read that somewhere)and it helped during my 1st chemo, I didn't have any. I use Bert's Bees for my dry lips and regarding 2nd Opinions I say Yes, Yes, Yes. I got them for every procedure I had: the bilateral masctectomy (general surgeon), the immediate reconstruction with Alloderm (plastic surgeon) and the chemotherapy (oncologist). I went with my second opinion surgeons everytime. I'm still seeing my first opinion oncologist but following my second opinion oncologists treatment plan. I am very happy with my decisions. We all need to take control of our treatment protocol. It really helped me have a sense of not being the victim and proactively determining my healthcare. My hair started falling out Day 14 and I had it cut like a Pixie this past Monday. I washed it today and it is falling out some more but I still can throw some mousse in it and cover the "holes". I will be lucky if I can hold on till Saturday. I hope so then I'll have it cut to the scalp. It really seemed to work for me to go gradually with my hair. It was down to my shoulder blades and then I got it cut to the base of my neck and then to the top of my neck and then the pixie. It helped my wrap my head around my new look. I also have a sister that is a beautician so she can do it when I need her to and she doesn't charge me. I know alot of you just shave it off and I think it's great you can do that but for me it just was to drastic. It's amazing how individual this journey is for everyone. To everyone else that has either started chemo or are starting, my well wishes and prayers go out to you all.
Michelle
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Hi everyone! First off want to say good luck to those ladies that started chemo today or are starting tomorrow! Sending cyber (((hugs))) for strength and courage!
Yesterday was my first chemo session....I met with the med onc prior to the administration of chemo and broke down crying when the nurse kept talking to me about my hair falling out...and then donating it....WTH? I was more concerned about the physical side effects and the treatment regimen. Well...needless to day, it didn't go bad at all but I did go from taking absolutely NO medicines to having about 10 bottles sitting on my counter at this time....ughhh. I had a bit of a rough night with nausea and diarrhea and a huge headache which lasted into this morning. I had an appointment at 11am in a town about 1 1/2 hrs away so had to venture that trip feeling like crap. Though after the test was over, about 2 hrs worth, my husband and I went to lunch and I actually ate a cheese burger and fries.....hmmmm hope that doesn't come back to bite me in a while! I am pretty tired, has been a long day, maybe another side effect or maybe just all the constant running lately with this appointment and that test, etc. I have one last appointment at 7am in the morning (ct scan, bone scan, and ekg) with the last test scheduled at 2:30pm... will be another long one but then the weekend to rest....I hope that will be it for my se's...immediately following rather than lingering! To those that have had more than one treatment: do your side effects change with each treatment or do they seem to be pretty consistant?
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HI Cindy--Read your posting and sparked my interest--I had bone scan scheduled for Tuesday and am starting chemo tomorrow. When I mentioned to my oncologist that I had bone scan Tuesday (as Radiation doc set it up), he mentioned to reschedule incase I wasn't well. It is now rescheduled for end of August so unfortunately have to wait. Now, reading your post--probably could have done it. Oh well...more waiting.
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Hi Adey, I am delayed too. Was supposed to start chemotherapy on Monday the 16th but am running a low fever, maybe related to surgery, maybe not, and the doctor wanted to do a round of Keflex antibiotic before port placement and chemotherapy.
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Hope everyone starting chemo this week is doing good, hang in there Aug. chemo sistas!!!
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hi. Thanks for sharing chemo experiences. It really does help. I have my first one Monday. I have doctor's appointment, then to the back of the office for chemo. I know I am going to cry a little. But I have made some peace with it too. My friend, who is 6 year survivor, said she would put it in terms of " I just have to do this 5 more times", then "four more", etc. etc. I think I will use that philosphy for the actual infusion dates. This office does not offer ice or snacks. So I am plotting how to get and keep ice there. They say it will be slow go this first time. I am shopping for chemo needs (lip balms, toothpaste, etc) tomorrow after PS visit. It;s kind of like preparing for some bad camp. Everyone take care and have a great weekend. Perhaps you haven't noticed, but you've all become extraordinary women.0
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rachel - my med onc actually scheduled it like this...I was wishing it would have been done "before" the chemo started...but guess so far it's working out! Everyone is different from what I am reading with the side effects....I hope I make it just one more day (for tests tomorrow) before all hell breaks loose if its going to! Thinking of doing the 'haircut" on saturday to somewhat match the wig I will be sporting to work! My hair too is very thick, naturally curly and almost to the butt!
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Hello fellow chemo patients. I was happy to read your experiences before starting my own treatment on August 24th and have it every other Tuesday for the next 3 months. I am only 18, but was lucky to catch the cancer early enough, as it hasn't spread anywhere else! I decided it would be best to take the semester off from school, and I know this sounds silly but when told this I thought, what am I going to do for the next four months?! I wish everyone the best!
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Adey and Omaz: Welcome back to the TBA list...I missed you two!!!!
Adey-I am on keflexin and cipro for an infection/burn on the foob! I have no fills or start date either. If this was Jet Blue perhaps we could all yell on the microphone at bc, grab 2 beers and use the emergency chute to get out of this mess!!!!!!!! Alas we have no such option...but the 2 beers sound good!
To all starting tomorrow, you should bring your super soakers to squirt the other chemo patients!!!!!!!!!!! I am not sure the others at my chemo school would notice because they are all about 80...they might just think the water is their tears or urine!!!!!! I am going to celebrate my first day of chemo with my new, gross nylon wig, on backwards (!), and my 2 Can Sam hat from college!!!!!! I am going to make you all proud...your FEARLESS leader will be the first person thrown out of chemo for drinking!!!!!!! Whoo hoo....good times, good stuff!!!!
That is all, that is all!
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Oh my gosh, fearlessleader. you have a burn on your foob. That is really terrible. Did the test proceedures cause it? I would drink too if I was all geared up to start chemo, which is no small thing and then got a foob furn. I think foobs is a very good pet name for the girls and appreciate your creativity.
Hang in there and keep us up to date on how you do. It is actually good that you are now delayed, burns can get infecgted and you don't want that for sure.
+Keeping you in my prayers for healing.
Ginger
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Thisishowilive: Sorry you had to join us...18? How did they find it? As for the next 4 months and how you might spend your time, I go to DIY stores, buy spray paint and have been painting everything I can get my hands on! I am also writing a screenplay for a comedy (not a writer but so many comedies suck I thought it was time!) I listen to Slacker and Pandora a lot...watch Jersey Shore (can u see it in Canada?..hopefully not...it is the end of humanity!) so basically I am going to hell in a handbasket as I wallow in mediocrity and shallow tv! I also talk to my cat a lot, try to avoid most phone calls and visitors as they all want to cry about bc etc... (and why you blah blah) and watch Jimmy Fallon which is cathartic and invaluable to my mental state...can you tell?!
BTW, Mickey Rourke is on right now and he looks like Jason from the original "Friday the 13th" which was made about 10 years before you were born!
I am only pretty sure you are young and fun enough to accept my juvenile chemo-behavior instructions! We shall run a hypothesis as I am sure no one else on this thread will follow my directions especially the super soaker part!
Seriously, though, I am so glad they found it and I am glad you found us. You can PM me any time you need anything and if you Skype, so do I. Let me know if you ever need anything. I am so happy they found it for you.
Happy trails, kid!
Your FEARLESS Leader!aka Liz
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To all on this thread:
Please give a warm welcome to our newest member, Thisishowilive, from Ontario. I believe she is also our youngest member also so let's not rough her up too much! No hazings, girls!
Your FEARLESS Leader0 -
Ginger...nah...I am being dramatic....It got infected and then the outer skin looked really red, almost burned. Nothing to do with the docs...they were great. It all started when I attempted to break the fall of an elderly woman going into a convenience ahead of me who tripped on broken concrete. Reflexes kicked in, I broke her fall and 2 nights later woke up with all fluid in my bed. Had to call my PS in the middle of the night, the next day the drain putting out "the" most fluid had been compromised, I can only assume, when I extended myself to help the elderly woman. Reflexes cannot be negated. That drain was nearly out by the time I got to the PS's office and it was summarily removed. The excess fluid pooled in the foob pocket, formerly known as my pec muscle, got infected and turned pretty dark red. In the end, burned-no; very red and burned-looking-yes.
That is my long answer!!!!!! Goodnight-
Liz
BTW- FEARLESS Leader is the name I adopted to remind the others I am more scared than they are!!!!!!! Seriously, though, you can really call me LIz
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Liz - That will teach you to help old ladies. You could have just super-soaked her, had saved yourself the trouble you are in now! ;-)
Sorry you are going through more crap!
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Good morning all/ afternoon Lisbeth! First of all, I want to wish the best of luck to those starting today: Rachel5738, AliceJean, Jsw, Lisbeth (and, please, anyone else I might have missed). So far, I don't remember anyone on this list having a bad first infusion (maybe someone had a skin reaction, but if I remember correctly, even that was resolved pretty easily, unless I'm wrong). Anyway, I hope you can take hope from that and go into your Tx's feeling confident and as unafraid as possible. Really, the infusion is the easy part, though, because it is a first and there are so many unknowns, it certainly can produce a lot of anxiety. I tried to go in simply expecting that everything would be fine, that everything would make sense to me, that everyone there would be nice. And it all turned out that way.
Welcome to Thisishowilive! I'm sure you've heard this a million times, and will a million times more, so sorry if it's getting old, but I am sorry you are having to deal with this at such a young and important age. There is so much going on in the life of any 18-yr-old, it's gotta be extremely rough to "take time out of your life" right now to deal with cancer. I wonder if, even though you're taking some leave time from school, if they would allow you to, for instance go there on the days you were feeling up for it, and say, have lunch with your friends, or just stop by and say hi to your favorite teachers, or anything like that. It might help you feel less lonely and more connected to your friends. The hardest part, I think, of taking time off, whether it's school or work, is the isolation. I'd say whatever you can do to stay connected and involved with your usual group of friends and supporters, the happier you will be. No doubt, though, that we will be here for you!
Re. second opinions. I got second and third opinions. As I told you all very early on in this thread, my treatment decisions -- well not the surgery decisions, those were pretty straightforward, whereas my chemo decisions were anything but straightforward. I actually ended up getting four opinions. First I went to the onc. that my surgeon, whom I loved and respected immeasurably, and she made two preliminary recommendations, one more preferred than the other, but said that there were some challenging aspects to my cancer that made the decision less than clear cut and that she wanted to do some thinking and consulting about it. I hadn't had the Oncotype test done yet then either, so she ordered that. So, while she was consulting with some of my other docs (for other med. issues), I went to a very high-ranking cancer center to hear their recommendations. I won't bore you with the story, but for a variety of reasons I ended up seeing two different onc's there at different times, one before and one after the Oncotype results were in. They both recommended the same Tx (without having consulted each other). Went back to the first onc., who now had the Oncotype score, and she gave me the same two recommendations she had in the first place only switched in order of preference. But she was willing to use either, and left the decision up to me. I chose the more aggressive one. She still had concerns though, and said she would be presenting my case to a tumor board along with my surgeon the following week. After that happened, she came back only recommending one option, and it was not the option that I had preferred or that we had spoken the most about. So I was flummoxed. I really loved this doctor for a number of reasons and wanted to work with her, but I because of how things had unfolded, I really had my mind trained on the Tx option she had now rejected. So I told her I would take a few days to think about it and get back to her. (She was very patient and understanding, and she recommended that I visit another oncologist, saying, "This is what I'm recommending, but you are the one who has to feel confident about the Tx you're getting. Do what you have to do to get that confidence." So I did go to another doc. I felt lucky to be able to get in with someone so quickly, but really I think if you are in a similar situation and explain that to them, as long as you can get your records/reports etc. to them, they most onc's will get you in quickly. Anyway, this fourth onc had the same two Tx recommendations, expressed a slight preference for my first onc's preferred choice, but said that either would be appropriate and that there were good reasons for going with the one I had sort of been planning on also. Thank God I had done A LOT of research and understood the differences between the two (outcomes, stats, side effects, both short- and long-term, NCCN guidelines, etc.). I gave it a little thought and decided, in the end to go back to the first onc. and go with her recommendation. It was a real marathon, and getting a second opinion doesn't usually lead to all that I went through, but I'm not sorry for any of it. I feel like I had four highly skilled oncologists examine my case, each of them coming back with similar recommendations, and in the end I felt comfortable with the Tx I decided on. It was not what I had initially hoped for, but I am at peace with it now. It was difficult having all these doctors say, "Well you could do A or B, either would be fine, pros and cons to both, so which one would you like to do?" In some ways I felt educated enough to make a decision for myself, but in some ways, I just wanted it to be clear-cut and uncontentious. I will say that the doctor-patient relationship as well as my impressions of the doctors strengths and weaknesses did enter into my final decision. The onc. I went with just scored a lot higher. But I did not want that to be the highest priority in making my decision, because what I fundamentally need from my onc. is the best possible CA Tx, not warm and fuzzies. The relationship is important and I'm relieved that I ended up with the doc who made me feel the best, but knowing that I was getting the best Tx was more important to me. So that's my two cents on the second opinion question.
A word on affording medications. ASK FOR SAMPLES if you don't think your insurance will cover them. I ended up taking samples home for two meds and I didn't even ask for them.
Also make sure ahead of time that you have what you need for your ins. co. to pay for them -- when I went to fill the Emend script the first day, my pharmacist said my ins. had not agreed to pay for it because they wanted pre-approval from the doc's office. I had never heard of this being necessary to get a medication before, but it was. So make sure.
I wanted to express my sympathy to all of you ladies who are premenopausal and possibly still wanting to have children. This has got to be especially worrisome and frightening for you. I am only 39, but post-menopausal (I went through menopause when I was 33). I had not had children yet and was hoping too very soon when menopause hit. So I have been through the horrible experience of infertility, just not because of cancer, and I can sympathize with the fears you must have. I know that many if not most women who have chemo before menopause regain their fertility once Tx is finished, but I realize that you all must be scared anyway. Just wanted to say that.
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Lizzymack, I am so sorry that you have yet another thing delaying your Tx. It seems like it's taking so long. I can related. My Tx didn't start until almost 3 1/2 months after Dx. I am sorry for the frustration you must be feeling.
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Hey everyone! Going through chemo in August, in fact had my first treatment 08/05/2010. I'm doing TCH for 6 cycles then Herceptin (the H) for the remainder of a year. My side effects have been nausea and vomiting (even on meds) but I'm prone to that. I will more than likely ask for a different medication. Also had the vomiting after surgeries which was caused by the anesthesia. I bought those motion sickness bands so we'll see how it goes with the next treatment. Other side effects are tiredness and feeling off balaance or dizzy. I'm trying to think of them as similar to pregnancy as others refer to them but I didn't have any of this with my pregnancy (lol). Not looking forward to weight gain from the steroids but we do what we must. I'm thinking I will probably do a lot of scarves when my hair comes out...not much of a wig person at least not during the warm/hot weather but might try one for the winter. What the heck, if you can't try new things during chemo when?! I wish everyone good luck with their treatment and try to stay positive!
I received some good advice from the chemotherapy educator prior to starting chemo. For side effect of peripheral edema use vitamin B6 (100 mg). Keep a bottle of salt water at your desk and rinse, rinse, rinse throghout the day to help avoid mouth sores. Use tea tree oil to help avoid fingernail and toenail issues. DRINK, DRINK, DRINK tons of fluids. As always, check with your physician before using any medication to avoid potential interactions. Take care, Ladies!
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Hi Everyone,
I will probably begin chemo August 26. I'm currently being treated for metastatic breast cancer that metastized to my bones -- I've been on Faslodex and Zometa since August 2008 (after 13 years of being cancer free!). At any rate, the Faslodex treatment is no longer working -- my PET SCAN on August 5 revealed cancer cells -- so my Oncologist suggests a more agressive regimen--chemo. Does anyone have a similar condition? If so, what chemo regimen are you on? I don't want a repeat of the chemo treatment I was on the first time around in 1995 -- which was AC. Any information or suggestions will help.
Thanks! And good health to all!!!
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Hi Everyone,
I will probably begin chemo August 26. I'm currently being treated for metastatic breast cancer that metastized to my bones -- I've been on Faslodex and Zometa since August 2008 (after 13 years of being cancer free!). At any rate, the Faslodex treatment is no longer working -- my PET SCAN on August 5 revealed cancer cells -- so my Oncologist suggests a more agressive regimen--chemo. Does anyone have a similar condition? If so, what chemo regimen are you on? I don't want a repeat of the chemo treatment I was on the first time around in 1995 -- which was AC. Any information or suggestions will help.
Thanks! And good health to all!!!
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Good morning Ladies,
I hope everyone is doing well.
After an exhausting day yesterday with my pregnant daughter at ER due to a UTI/Kidney infection. She is okay Thank God.
My husband and I are off to go wig shopping.
Have a great day!
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Wherria: After all your consults, which chemo regimen are you going to be on? Which ones were recommended? Your diagnosis is similar to mine. thanks
Good luck to all the starts this week, especially you starting today on Friday the 13th (which I saw a program on the History Channel one time that said Friday the 13th actually started out as a good luck day and somehow evolved to what it is today; which I believe is just another day).
Rachel, let me know how you do on the FEC-T (these will be my drugs also).0 -
Hi over there on the other side of the big blue. Since it's evening here now, I'm already 6 hours past the treatment, till now things haven't been that bad. Nausea, yes - about 4 on a 10-scale. Here at 6 I could take another pill, and I haven't used the extra "just in case" medication that they sent some with me to use freely. I feel so privileged to live in Denmark now - not when I'm paying taxes - but now when they send me home with all the med. I need - except for things for the digestion, if that turns out to be a problem. I'm eating small bits of fruits, bisquits and drink a lot of water. Feel a bit dizzy, have a bit headache, but till now not so bad. The nurse at the oncology ward was so nice, she stayed with me and my husband all the time, and we talked a lot, including all the medical information. There was another lady in the room getting treatment too, it turned out she was from the same town as me, I didn't know her, but my husband had met her husband once at an election session. So we had quite a nice time despite the occasion.
So how are you doing - especially your three girls who're probably sitting there right now!
Best wishes
Lisbeth from Denmark
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welcome Ann -- sorry you have to join us! I think they may be doing things differently now, even with AC treatments than in 1995. My oncologlist told me of various treatments, including AC, that they used to do and that they have found by tweaking things, which they have been doing in recent years through trials and such, they can lessen side effects and toxicity-- so in other words, the AC you had 15 years ago may have been quite different from the AC recommendation you might get now. They often now tack taxol onto the end of the AC routine (so you'll see AC and then 8 weeks or 12 weeks of taxol being talked about here). Taxol has been added the last decade or so, from what I read, and has contributed greatly to the success rate of bc survival rates.
Someone else might be able to offer more insight -
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