Starting Chemo in Nov. 2011...anyone else?
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bc50, I was also freaked out about the "red devil" nickname, but it's named that because it's red. It doesn't hurt going in or anything, and although (adriamycin--its real name) causes SE as others have outlined, so far they've been manageable. I do get nauseated starting about 3 hours after tx ends -- this last time (2 out of 4) the nausea lasted 48 hours on and off...but you can function if you take your meds. I'm also using complementary meds from my naturopath (approved by my oncologist) that I believe are helping me with side effects from the AC now and the T (taxol) later. Too many supplements to list here, but I'm grateful I have both docs on my team.
Contrary to the "you feel worst about 3 days after tx" that is when I begin to feel a whole lot better and then it's just an upward thing till the next tx. So the "red devil" is just a drug like the others, and not anything to worry about. General side effects are shared by many, but we are unique: so far I've not had constipation issues, fatigue isses (except the 48 hours after tx), weight gain. Just loss of appetite and loss of hair! I don't look good bald, and hate looking in the mirror, but it's TEMPORARY. if you can find one or two looks that you can wear while in public you'll feel a lot better and so much less self-conscious. We are all in this together and understand.
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PS Texasrose, I cut my hair super short and got a bunch of compliments...never had it short before. It seemed to fall out nearly over night--still had it for my second AC tx then 2 days later I couldn't put product in it for styling without hair coating my hands...so I rocked that for a few days, didn't wash it every day, then started feeling bald scalp and told my hubby "just do it." To me it seemed like the last big hurdle in this for a while and I was just anxious to get it over. Last night I went to bikram yoga for the first time since being bald and used a bandana thing--hate the scarf look since I'm more of a fleece, running shoes, outdoor girl and it just feels so different from my style. It was scary putting myself out there without anything more than a bandanna between me and my other practioners, but no one said a thing to me and I forgot about it after while. So you can do this. I try to tell myself that most everyone else in the world is thinking about how THEY look, and not scrutinizing anyone else as much as we think.
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Clairinaz -- I started on the 17th. Am just now seeing/feeling the effects of hair loss. I wish I was bigger and could say it's okay -- but I'm not there yet. Was scheduled to have wig fitted/style on Thursday (2 weeks from first treatment)...but I'm not there yet.
Wishing you and all others strength!
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It seems that I develop sores in my mouth 7 days after treatment. Last night, I started getting the thrush and chemo mouth. I try to eat but decide it isn't worth it. I will be eating a baked potato tonight. I think this sounds like a gourmet meal!
The waiting is definitely the worst part of this treatmen regimen. I go for my 3rd fill in my expanders and can't find anything to be nervous about. I just hope my sister and I can go into some shops when we are out. My energy level is not the best right now. It is is rainy, cold and turning into snow. After two days of rainy, gloomy weather, who would be up and excited about the day?
To those of you who have lost your hair, did it all come out? I have stubble on my head that gets caught on my hats. I wear the hats in the house to keep me warm. I had my head shaved with an electric shaver. Did any of you shave with anything else and does the stubble go away on it's own?
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linnyhopp, Yes, I can see by all of the posts that the waiting is the worst. I seem to do alright for a couple of days and then get anxious again. I'm trying to get some things done today and seem to feel better; especially after checking in here. I am also going to try and start a journal. I'm not very good about keeping up on things like that so I'm sure how well I'll stick to it.
GrandmaV, Thanks for list of others with my treatment. I'm finding it a bit difficult to maneuver around all of the threads and posts. So, if any of you reply to my posts and I don't reply for awhile or at all, it's because I have haven't found it yet!
Bonseye, My brother had treatments several years ago and he told me that he could only eat fruit, veggies and smoothies. He said he couldn't stand to eat anything hot. I will try to find the Prevention. I live in a very remote area and only have a WalMart here. Will also look at the pharmacy. Thanks for the tip. I totally understand about the hair loss. I am a pretty plain looking person and had a terrible time buying wigs yesterday. I tried on a gazillion of them before I found one I really liked. I bought two but an not totally sure about the other one. I look horrendous in hats and scarves WITH hair so only can imagine that it will be worse without hair. I did order a bunch of them from the internet last night to wear at home. I sure don't want to mess with wearing a wig at home all of the time. When my friend lost her hair during chemo, she did love not having to take care of it anymore. Said it was kind of freeing.
Clairenaz, Thanks for the heads up on the adriamycin. I'm sure I have the "think the worst and it won't be so bad when it actually happens" syndrome about it right now. As you can see, I am in the same boat as you about hair loss. I can't stand the thought of it! During my worst times, I get mad about the fact that I have already lost both of my breasts and now all the hair on my body will be leaving me and I'll really look like a freak. But then, I calm down and figure that after it's all over, and I've looked like that for awhile, my confidence will be stronger than before the cancer was diagnosed because I'll feel like I'm a knockout after getting my hair back!!!
Well wishes to all of you ladies. We may look and feel crappy during this time in our lives, but we shall overcome!!!!!
Oh! Want to end with a funny short story: When my husband and I saw the oncologist yesterday, she told me that I would be knocked into menopause after I start hormone treatment (which I already knew). My husband on the other hand, didn't. When we were driving home, he said to me, "When she said you were going to be pushed into menopause by that drug and with everthing else you are already going thru, I thought to myself, oh man, am I in trouble."
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Today is day 14 since my 1st treament.. Hair, hair everywhere.. my hair is coming out in handfuls.. my nether region is gone!! Friday I am having my head shaved.. We are actually having a party..a few close friends, DH and my sister on skype..a little wine and tears.. kissing the cancer goodbye!!
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Lory ~ Yesterday was day 14 since my 1st treatment and my hair let loose too. It does come out in handfuls and while I fear the baldness (probably way more than I should considering it's temporary), I think I will get mine shaved tomorrow. I just spoke with the wonderful person who I bought my wig from. She is an 8 year+ colon cancer survivor and only does wigs for people needing them due to medical reasons. She said something that made sense to me and helped me make my decision. As she put it, the hair is really already "done" and is just hanging there waiting to fall out...dead hair as she put it. I think that makes sense and I am hoping that while I know I will cry, I will have some control and not watch it go in patches or whatever. My DH will take me there and has even offered to rearrange his work schedule to do it. What would we do without our wonderful supporters, both at home and here on this board. Take care and know I, too, will be kissing the cancer good-bye!! Linda0
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I just read today from one of my ACS pamphlets about having the bitter or metalllic taste in your mouth while eating. Their suggestion was to trying using plastic utensils. I tried it and it did seem to help a little.
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Beth, I have stubble in the back, but I actually think it helps wigs and hats stay on. Kind of like velcro, so I don't mind it.
bc50, thanks for the chuckle, I needed that today.
Lory and Linnyhopp, I agree with you, once the hair starts to go, we might as well help it go a little quicker, anyway that's the way I felt, once it was making such a big mess in my food.
I had my 2nd tx today and had a bit of a reaction to the taxotere. I didn't have a reaction to my 1st tx, but the nurse said sometimes people will have a problem with it on the 2nd or 3rd tx. I was fine one second and the next second It was hard to breathe. I told my husband and could see he was moving too slow, so I managed to yell out, "I have a problem!" and before you knew it, two nurses were right there, stopped the taxotere. I managed to say, " I'm going to pass out", and they had me recline with feet up, shot me in the thigh with an epi pen, put more steroids in the IV bag, and had me take 2 puffs on an inhaler. I started to feel better, so after about 20 minutes, they started the infusion again real slow and gradually increased the speed. Took 3 1/2 hours just to get the taxotere done. The Carboplatin and herceptin went smooth. It was a little scary, but all is well now. We're home and I feel well, just jumpy from all the steroids. They said next time I will have steroids to take at home, the day before, day of and day after tx. I had asked about this before, but because of my insurance they couldn't do it, until it was medically necessary. Well it is now. They will also start my infusion slow.
That's my story for the day. I hope everyone is doing well.
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GrandmaV ~ Sorry to hear about your reaction. I am very glad that I have the before and after infusion steroids to take each time now. I wondered why they insisted I have them, now I know. They did say they wouldn't be giving me the Benadryl anymore so I hope I won't have any problems without it. I hope you have a lot less SE's this time, especially since you have already gone through a rough time just having your treatment. Take care of yourself!0
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hi all,
Big week this week. I have been dreading the hair loss thing and was told with the taxol and herceptin, I may just thin. NOT. It began coming out in strands last week and by yesterday was almost all gone. Went to look for wigs yesterday. Very little luck and some panic setting in. Today went to have the stitches from the portacath surgery removed, simple but another hospital trip! Came home and went to my hairdresser who shaved my head so I look like a Marine recruit. Not my best look, but the coming out in clumps was not it either. She also had two wigs from someone who had cancer a year ago and is letting me borrow them . We played arround with them and I left without crying, a major feat. Went out with a friend who gve me the thumbs up on the wig. So feeling better about this portion. I will wear the wigs when I go to work or out for something I might care about like a holiday party. At home wig free and OK.
All these losses are so much to deal with. Feel like I am constantly grieving whether it be hair loss or upcoming masectomy. The anticipation of the hair loss was worse than the actual experience and once I was done today I was better. I am hoping that will be the case when I get to the masectomy as well.
Hope all continue to move thru as gently as possible
Nel
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bc50,
If you're thinking about starting a journal, you might check out a free website service for this type of situtation. It's called CaringBridge.org, and it's very easy to use.
I started my website right after I discovered the lump in my right breast, and I've been posting updates regularly. It's a great way to keep my friends and family in the loop without all of the phone calls. It also allows you to post pictures. So far, I've had over 700 visits on my site. Best of all, it's good therapy for me in facing my "Enduro Race" with a positive attitude.
Here's a link if you want to check it out:
http://www.caringbridge.org/visit/debwill
I also enjoyed your story about your conversation with your husband. Mine has been so supportive and understanding.
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GrandmaV--I'm sorry about your experience today. I'm glad you were aware enough to call for help. I think this is the scariest part of this chemo trip--side effects, medicines to counteract the side effects, etc. I hope the rest of your treatments are drama free.
Nel--I deal with loss everyday. I had bilateral mastectomies 9/19/11. I opted for reconstruction with expanders never expecting to need chemo. Some days are better than others. We each deal in our own way. This discussion board is a good place to share with others who know what you are going through.
Be safe everyone and stay strong!
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GrandmaV, Wow, you did have a scare. I'm so glad everything turned out okay.
racerdeb, thanks for reminding me about that site. My husband had a friend, that is unfortunately not with us any more, who posted there. I had completely forgotten about it. I'm thinking I want my journal to be more private and just for me, for now. Although, you did remind me of the fact that family members and friends can be upated more easily that way. I may use it for that.
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Renee 728-
Thank you for sharing. I called my doctor who called in a script for me. I am so glad you shared with me. Hopefully it will do the trick for me. Thanks again.
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GrandmaV, So glad you are feeling better after that scare-I will remember that on Tuesday when I go for my second treatment (I am doing the taxo as well).
BC50, I started a blog after my diagnosis. It gives me a place to vent and type my feelings away, AND gives my family and friends the opportunity to read what I am feeling. I can say it's a true release to use this blog as a vent. And I really do not care who's feelings I may hurt by my words.
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racerdeb and Lory48, I did go into caringbridge and got one started on a journal. I don't know how well I will keep up on it; I'm not very good about it. I'm betting it will keep my attitude up. Thanks for the suggestion from both of you.0
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linnyhopp, thank you for your post. It's so nice to have the support you and the others give me. I'm not getting the Benadryl anymore either. The nurse said it was for the herceptin and since I've done so well with the herceptin I would not need Benadryl anymore.
Beth, Thank you for your well wishes, I appreciate it very much. The nurses were quick to respond and had everything under control in a couple of minutes. I don't think they're going to let that happen again. They sent the inhaler home with me to bring to my next taxotere treatment to take before the infusion begins and they made sure I have the steroids I'll need. They were great.
bc50, thank you, I appreciate your comment, too.
Lory48, thank you, the nurse did tell me that 95% of patients receiving taxotere have no reaction at all. It's just that 5% that have some kind of reaction. But even though it's a small number that do, they are ready and know how to get it under control.
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Hello ladies,
I started chemo on Nov 17th and will go every 4 weeks for 4 sessions.
I experienced a little nausea on the first day but the meds helped so I didn't actually get sick. The worstvof it was the exhaustion! I tried to work the day after but only made it a half day. I took the following Monday, Tuesday and Wednesday off. If it wasn't Thanksgiving week, I probably would have gone in on Wednesday. I am a special Ed paraprofessional at a high school. I am the only one working so I can't afford to be out, I've exhausted all of my sick days and don't get paid if I don't work.
I planned on going back to work Monday but insomnia kicked in Sunday night. I had to take a sleeping pill Monday night soi could make it in yesterday.
The body aches and pains also took a toll on me, fortunately they only lasted a week.
I haven't lost my hair yet although I was told that 2 weeks after my first treatment to expect to start losing it. Im ok with that, I found a couple of beautiful wigs at e-wigs.com.
Gtg now need to get ready for work
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BC50 - I am on the same regimen as you are. I just had my second dose yesterday. Let me tell you, you CAN get through this. I know everyone is different, but it does seem for every side effect there is a drug you can take to counteract it. I just take all my meds they give me, plus extra ones for thrush now, and it is doable. For me, days 4-6 are the worst. After that, I was totally fine and back to everyday life. I too started a blog. It's definitely the only way I can keep everyone updated. Everyone knows the days they can call me, and the days I'm out of it. And it's theraputic for me, because I've had some bumps along the way. It's a public blog, so I don't use real names, but feel free to read it. I know I like reading others experiences, it makes me feel more normal!
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Such courage in these posts. Just amazing.
I went to my new hospital in Illinois and had my third CMF infusion. She gave me steroids although I told her with diabetes and high bp I didn't think i should have them. she said everyone gets them and it only lasts 12 hours.
By the time I got home my heart was pounding and I had chest pains. Has anyone else experienced this? My bp was 133/75 at the hospital but at home it was 210/108. I've never had chest pain before and it was very frightening but I was more afraid of going to the hospital again. I knew they would never let me go home and would do a million tests. So I went to the mall.
It was freezing and there were gale force winds and I figured that if I can walk in that i was not having a heart attack. No shortness of breath or weakness. I walked and walked and the pains went away! When i got back in the car they returned but not as bad. By the time i got home my bp meds kicked in and i fell asleep but the heart was still pounding. by 4 am the pounding stopped. Anyone else here have such a reaction? Was it the steroids? My dr. at sloan said i should not get steroids and i told them but they did it anyway.
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Hi Ladies I am starting chemo on Mon. My 1st treatment is AC and I have a port. I forgot to ask the Dr how long the infusion is. How long have your infusions been? I am having labs at9 dr appt at 9:30 and chemo at 10. Thanks. Hope u are all doing well!
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The steroids really had my heart running also. I was very hyperactive (talking a million miles an hour), couldn't sleep and my pulse was racing. Although it didn't affect my blood pressure, my pulse was running in the upper 90s, when 60-70 bpm is normal for me. Once I finished my post-chemo steroids, everything went back to normal. The doctor told me that the steroids help with the water retention caused by the chemo.
Apparently, this type of reaction is normal. We teased in the chemo room yesterday that it's a great time to do some 3A Wal-Mart shopping!
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OMG Grandma V I am sorry to hear of your incident! I am glad you are doing well now.
And ClaireinAZ You sound like you are doing very well. I hope so! Aren't we lucky to be living in cold but not wet and nasty weather?
When I went through Chemo many years ago I had CHOP which included Adriamycin. The tx was well, brutal. No way to manage the side effects then. Hard to believe the changes now-- they have so much to take care of most of the side effects. Mostly I hear from people are the mouth sores and hair loss. I would love to keep my hair but really dont care. It will come back, it is only a temporary loss. And, if I keep in mind all of this is temporary, I feel fine with it all-- except maybe the weight gain! very uncomfortable feeling. You'd think that we could at least not have to worry about that!!! One gift...please??? LOL
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I have a question--
Many of us are going through different treatments. So when we feel side effects and what we feel will be different. Could all you gals tell me what your protocols are? Like-- 1X/week for 12 weeks, Taxol, herceptin.. etc.?
And Claireinaz, who are you seeing as a naturopath? I still have lots of friends and colleagues up there.
Q
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to 3girls, the first treatment is the longest. They infuse at a totally different rate in order to see how your body will react. I cannot tell you how long yours will be but mine was about 5-6 hours long with all the premeds, etc. plus, I got Herceptin which has a loading dose taking 90 minutes to infuse.
I would count on bringing a book or some type of entertainment!!! LOL
Q
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Last post-- I promise!!
I go in today for my 4th chemo. right now I am every week but each week I am expecting it to change - both the timing and the protocol. I developed a seroma that would not stop and so, the chemo was essentially, downgraded. I am a sensitive gal....
I get every SE imaginable. I just want this to do the job and get me back to life. I felt so good yesterday and was appreciative of every moment! Q
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Hi all, yes, 3girls, it takes longer the first time. I think it was like 4 hours or something; they have to infuse slowly to make sure you don't have a reaction. Last time it was a lot quicker because I tolerated everything. (BTW I'm getting AC x 4 DD therapy every other week, then 12 taxol weekly DD therapy.) I have stage II ILC grade 1.
My third AC is day after tomorrow, sigh. My hair is gone, just stubble that I find on my pillow, like what you see in the sink after your husband shaves. Weird. I do not look good bald.
I think we all share some similar SEs but not all of them, and not at the same time or degree. My worst time after chemo is immediately after and then for about 48 hours more. No weight gain, some loss, actually, but I'm not taking steroids except for a small amount infused before my chemo drugs. I have to be careful not to eat foods I like during the bad times, because I'm finding that if I think about that food later when I feel better I get sick again. Association, I guess.
Qaatsi, I see Mary Poore; have been for years. And we've been having beautiful weather up here in No. Az too but there's a storm on its way--8-12" of snow Fri/Sat, which makes me nervous since we have to drive to Sedona down 89A for my tx.
I too use caringbridge.org and found that it is helpful for me to vent and share my feelings, and helpful for my friends and family to find out how I am without having to send out repetitive multiple emails. I recommend it.
Here's to all of you (lifting my cup of green tea) brave women, survivors all! XO
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timbuktu, I had a lot of steroids yesterday, because of a reaction I had and I did experience the heart pounding, but no pain. My bp did elevate, but not to the extent yours did. I don't have diabetes so maybe that's the difference. Be sure to report all of this to your new doctors and maybe they can consult with your old doctor so this doesn't happen on your last tx.
Quaatsi, thank you for your concern, it is appreciated. btw, my regimen is Taxotere, Carboplatin, Herceptin every 3 weeks x 6, with herceptin every week in between. When TC is all done then herceptin every 3 weeks to finish out the year.
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GrandmaV,
My treatment plan is exactly like yours. Our status is very similar, except my tumor was a bit bigger (Stage IIA).
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