August 2015 Chemo Group
Comments
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Kate I was wondering how you were doing on Effexor. My hot flashes seem to be getting worse. I hate waking up at night with all my clothes and sheets soaked. Is there anything else they can give us?
I am also sick and tired of being sick and tired. Just want to feel normal again. I'm not sure what that feels like. I also feel like the sick Cancer patient....so not me....I was so healthy and strong before all of this. Just feel like I have been hammered down. Every treatment takes me a little further down. Looking for the light at the end of the tunnel. It is there and I'm just trying to get to the end without the light going out.
We just need to hang in there. I'm sick of being Debbie Downer.....0 -
So we're all tired, fed up, wanting to be normal again. Me too. Sick and tired. Have been in bed.
But most of us are nearly through chemo, aren't we? My last infusion is in 5 days' time.
Ever the optimist, I'm trying to find a positive comment. Here's one. I just discovered that toasted cheese still tastes of cheese even though cold cheese tastes of cardboard (like most other things on taxol). So now I'm toasting my cheese :-).
Bear up all!
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hey everyone, those of you on taxol do you have bone pain? And if you do have you found anything that helps?
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No bone pain on taxol, just flaked out. But I think bone and muscle pain is very common.
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MsBrompton, I had toasted cheese for dinner last night, and it hit the spot! Three cheers for your last infusion in five days. Does that make a total of six?
DeeRatz, the light won't go out. That's what I'm telling myself. We feel like utter s***, but we'll endure.
mama-bear, try Claritin (or ask your onc). I've had minor bone pain on Taxotere, and I'm told it's normal. Ibuprofen and Claritin have helped.
Il faut d'abord durer.
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I've done 11 of 12. Longest 3 months of my life. But yes, we will endure. Thanks Kate!
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I took the clariton while on A/C for the neulasta... but no body said anything about it while on taxol. I will start it. It can't hurt. I have been off work while doing the AC and start back tomorrow. I work in a bank so my MO was too worried about the money. I am kind of freaking out about going back. I am genuinely terrified to go. My emotions have been out of control yesterday and I am worried about just breaking down at work. Work has been amazing and wonderful, but what if I can't make it all day.... I will feel like I am letting them down. I just feel overwhelmed right now!!! But You are all right.... there is a light.... it seems that right now it is not very bright, but I hope it gets brighter.
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Dee - so sorry you missed Madonna, but glad you are on the mend.
So happy to see many of you just finished or will soon finish up.
I had my 4th and final AC a week this past Thursday and it was another rough one. I really feel for all of you that are struggling with both physical and emotional SE's. I'm feeling it, too. This time instead of a bacterial infection, I got thrush. I guess the antibiotics for the last infection combined with the chemo was the perfect storm. Unfortunately, I didn't recognize it right away and it got pretty bad. I've been on the couch every day, but today I managed to take a short walk. A few months ago I hiked up mountains and today I struggled to make it around the block. I start Taxol on Thursday. If Taxol isn't easier, then I have a hard time seeing how my body will hold up. But it sounds like it is easier for most people, so that is what I am counting on.
One day at a time. We can make it.
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We are all hitting the wall I guess. The last two days have been rough. I have no schedule, or clue, as to what my SE schedule will be since we have changed the taxanes twice. I am on this roller coaster and barely holding on. Seriously! My hands and feet hurt! I decided today I would do something normal and something for my kids so we went to a movie. Jurassic World finally hit the dollar theater and we have been dying to see this one. It was miserable breathing through a mask, but I only ended up in the bathroom once and really had a great time. So good I thought, hey, let's eat out. That was too much. I am on the couch bone tired...
By the time this is over, with a year of Herceptin, I tallied I could have as many as 30 infusions. And only 11 down. And I don't want to do the next 7. I don't. I want energy. I want food to taste like food. I want my bowels to work normally. I don't want my hands and feet to burn. I don't want heart palpatations. I don't want anymore chemo. Did I mention I want food to taste like food again...?
Still, the movie was good!0 -
I think all of you are courageous women and truly amazing! I feel like I have gotten to know you in some weird way. Thank you for making me feel "normal" in this mess we are in. And so much information! I have definitely learned more on bco than from my mo! And that includes a slew of acronyms...although I sometimes am unsure about whether the "d" in dh really means dear!😉
Dee, will it make you laugh if I told you I cried when I read you missed seeing Madonna! Hormonal and tired can make for lots of tears! I hope you get another opportunity!
I am TCH every 3 weeks, 12 days past my 3rd treatment. Will do the herceptin through next August, rads after chemo, and tamoxifen for 5 yrs. My mil (a survivor who chose double mx, no chemo, no rads), has been really pushing and questioning all my treatments. I was at peace with my decisions , but now back to second guessing. Where is that line between overtreatment and doing everything available to us to make sure we never go through this again? It is the rad tx that I am wrestling with now.
Kate, glad to hear you are a Michigan State fan! What a crazy win! I am a Penn State fan and we had our butts handed to us!
Thank you again wonderful ladies for helping me make heads and tails of this roller coaster ride our bodies and emotions are on! 💟
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I am sorry so many of us are having a rough time, but in a way I felt better when I read your posts, because today was one of the hardest days of my treatment so far. Not because of nausea or anything, but just being so darned tired. I had infusion #8 of twelve on Friday, and from what I understand the last 4-5 are where the side effects really start to accumulate. Slept late. I got out for a little bit this morning, but after a long walk I was super tired and just had to sleep. Slept all afternoon, then went to a party with hubby and son. I really felt out of it at the party and hardly talked to anyone, and I didn't really feel like eating. Came home and slept from 8pm to midnight. I count a total of about 11 extra hours of sleep today. And I will have no problem staying asleep all night I'm sure. Just hoping tomorrow can be a normal day.
KateB, I have to say I envy you being able to tolerate milk thistle - it's what my naturopath prescribed for me for liver support, but it's also what gave me those itchy hives on my hands, so I've had to discontinue it. If it works for you, I'd tell your MO about it, but go ahead and take it.
My liver enzymes have been slightly elevated from the start of treatment, but my MO isn't too concerned at this point. They were more worried about the high potassium, and fortunately it is gone. So. Four more of these weekly infusions and then I have 12 months of herceptin every three weeks to look forward to. The only part about that I'm looking forward to at all is that I'll still be able to see the lovely people I've met at the clinic who get their infusions on the same day that I do - I will really miss them when all this is over.
No sign of my halo wig and no word from the chemo diva people. I'd really like to have something to wear on my head other than my wispy hair, a hat and a smile!
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Some good news ladies: after five days completely shattered, for some reason I woke up with some energy today and have done my 6 mile walk - and actually enjoyed it - for the first time in several days. And that's at #11/12 on the taxol. I'm posting this because I know some of you are dreading the last few infusions. Sure, it gets worse, but there are still good days.
Movies are good. Nobody can spot if you're asleep in them, but you feel like you've been 'out'! Last week, Suffragette. This week, The Program and Spectre (for spouse's benefit). Next week, Hamlet with Benedict C. Some old Woody Allen's are coming locally too.
Oh, and Cheri1107, maybe we should start a thread on mothers-in-law. Mine didn't have cancer herself but she has a friend who had cancer so she therefore knows all about mine. Why somebody else's colon cancer should dictate when and whether I have a reconstruction of my breast, I'm not sure.... The only weapon here is surely humour, because if it's not funny it's tragic :-).
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MsBrompton, you're cracking me up.
And you're so right about humor. I lost my sense of humor this weekend, and that's why I was feeling nihilistic.
I love it when people feel qualified to talk about cancer treatments as if they're oncologists. The "aren't you worry that they're over-treating you?" question is baby steps away from, "here, take this magic snake oil and be cured!" . . . On the other hand, I've had to explain HER2+ to so many people, which I guess is good: awareness is important. I've also had to explain that even though I "don't look"old enough" for BC, rates are on the rise for women in their 20s, 30s, and 40s.
Even by writing this, I'm feeling better. If it's my job to raise awareness, than I accept.
I'm determined to make this a good week. I may not feel well physically, but I will not let this crap take my humor and good spirit!
AND: my hair is growing back, sparsely but quickly. It's hilarious! I can't wait to get it all back.
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Cheri- well the d in DH could mean different things on different days....at least in my world. I'm sure he feels the same about his bald hormonal wife who sweats like she is in the Sahara desert at night.....make it stop. Thanks for crying for me....as they were awesome seats.
Musosgirl- you are right in saying we are all hitting a wall. I feel like a wimp as I only have 4 infusions. 1 every 3 weeks. There are many of you facing so many more than me. I just need to suck it up.
MsBrompton-I guess this is our final week. The countodown to the end is near. Glad you got to enjoy your day. I laid in bed and watched Netflix and had a visit from a friend. I have mostly kept people from visiting because I'm scared to catch anything.
Kate-I hate the suggestions for treatment as well. This is my Cancer story, I will take what treatments I feel are necessary. Unless you are in my shoes making my decisions for me please keep your opinions to yourself. What I really want to say is, "Shut your pie hole". My hair is also growing back. It was mostly white fluff but I have lots of dark hair coming in. I can even feel my hair moving when I am walking. I told my daughter that I was soon going to have to pin my bangs back. We had a good laugh.
The only good thing about being hospitalized last week was, I didn't have to go to Thanksgiving dinner at my Mother-in-laws. She is a terrible cook and drives me insane. I usually pre-drink and pre-eat before I go over there. I also make sure I bring lots of wine along so I can endure the visit.....
I vote we all have a good week! That we can all hang in there for a bit longer. We got this! We can do this!0 -
I second the motion that we al, insist on a good week. As good as we can squeeze out of it. On ward and upward friends. Inward and upward.
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Aloha! I am back from my vacation, feeling rested and
ready for Taxolas ready as I'll ever be. The last week was a taste of physically feeling normal and it was wonderful. Hawaii was beautiful, of course, but it was the break from CANCER STUFF that was so great. I ditched my head wraps and was either bald or wearing a sun hat like everyone else. I swam, hiked, did all the touristy stuff, and even ate shrimp from a food truck. Risky!
In case anyone is curious, I used a Trulife swim breast form and it worked great. It's made of beads, so it doesn't soak up water and it didn't float out of my swimsuit. And spray sunscreen (Nutrogena) worked great on my scalp.
I start 12 weekly Taxols on Thursday. My MO keeps saying it's better tolerated than AC, and I really hope that is true. I am supposed to go to a Halloween party on Saturday night; I hope I feel up to it. My husband and I are going as Dr. Evil and Mini Me. Is anybody else working their bald heads into their costumes?
DeeRatz, I am sorry to hear you weren't feeling well and couldn't go to the Madonna concert. What a bummer!
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Hey August! If it's ok with you ladies I think I am going to hang out here more than July because while I technically started chemo in July it was at the end and I have had THREE delays so now I am squarely into August. I should have had 12/12 taxol (with 4xcarbo, which was every third week of that) today but my neutrophils and platelets were too low
I am going back in to see if they are up enough on Wednesday to carry on. Then I am to start AC the following week. I will get neulasta with AC but didn't have it during the carbo/taxol portion. For anyone else who has had delays, what do your doctors say about that? Mine just says "don't worry" which is very hard to do...0 -
Welcome, notdoneyet! Most of us aren't done yet, either. . . [rimshot]
vickirides, welcome back! So glad you had a great trip.
mom2aboy, I'm not allowed to take milk thistle, after all. My MO is squarely against it while I'm in treatment, so I guess I'll just hope my old liver will hang on until treatment is over, at which point I will cleanse the hell out of it!
Interestingly, I am allowed to take vitamin E (800 IU per day) for the hot flashes, and melatonin to help me sleep (since I don't want to take Ativan every night of my life). I thought antioxidants were a no-go, but my MO herself recommended the E. Weird how things work.
Yeah, we're all hitting the wall. I think this is what they (whoever "they" are) warned us about. I remember being all gung-ho a few weeks ago, all like, "I will slay this crap," and now I'm really feeling it. But--I'll say it again--strength in numbers. We're all having different-but-similar experiences; I just read an article the other day about how survival outcomes are affected, positively, by online support communities. So we're doing something right! Whenever I feel like I'm the only person in the world experiencing what I'm experiencing, I come on here and feel better. It might be chemopause making me overly emotional and sappy, and I know I've said it before, but thank you, all of you.
I've committed myself to having a better week. Today was rough--I almost canceled my last class, but then trudged through. I'm soooooo behind on marking papers, but I'll get it done. Tomorrow is a new day; it's supposed to be gorgeous outside, so I'm hoping to head out into the cool sunshine.
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I've been marking today in minutes. Sometimes that's what you have to do. You're right Kate, I looked at the weather for tomorrow, a balmy 17c here in Ontario, with sunshine. Good on you for trudging forward. The Jays play tonight, the election is on, I may go tuck into bed and nod off to the cheers of my Jays fans, or whatever political party is winning. Tomorrow will come sooner that way. \
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I agree that this is draining. I had to go off these boards for a little while because it started to define me too much. I felt like I was becoming all consumed with cancer. The road just seems so long. I feel like there was adrenaline in the "acute catastrophic diagnosis stage" and now I've moved into the "this is every day for the rest of my sad shortened life stage". But as bad as I feel many days, there were also more days round 3 that I felt pretty normal. I even took my daughter and our Girl Scout troop camping this weekend. I have all my scans scheduled in two weeks, before round #5. My MO said there may be as many as 8 rounds with taxotere. My strategy is to have them done then go on vacation to Florida with my kids and husband before the results are read. I just want to be with them. We had such a lousy summer, so hope to put it on rewind a little.
So I've decided to not let the cancer define me, but I will let my reaction to cancer define me. Stronger, more thoughtful, more grateful. Happy to be back on the boards. I really missed all of you inspiring and supportive women.
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welcome back blue frog, happy to hear you took a break and reflected. Vacation in Florida sound fabulous. My DH keeps asking me what I want to do for this year and I keep living I this moment. Tomorrow I'm going to decided. Maybe Sandestin in March. I've wanted to go forever.
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Mmmmmmm peanut butter. That is all.0
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What a wonderful surge of energy! Thanks all for the positive postings and photos.
I am AT WORK (seems very weird).
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Vicki - So glad you had a wonderful trip to Hawaii. Yay for vacation!
Bluefrog - Welcome back! I totally understand needing to step back. Thanks for your uplifting post.
And thanks to both of you ladies for the beautiful photos!
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i am driving up for a mid-chemo MRI today (well, supposed to leave in half an hour but just heard on the radio that all lanes of the interstate are blocked by an accident right where I need to go, very nice, probably leaving as soon as I finish typing this). I am also going BACK in tomorrow morning to see if my neutrophils manage to get above 1 so I can get my last taxol. I haven't asked about neupogen but I was right at the threshold for getting a transfusion on Monday, I may exercise that option if i am a no go for taxol and my hemoglobin is still low. I am not in a hurry to get finished so much as worried that the delays let the beast get stronger (this is my third one-week delay).
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Vicki-glad to hear you had a great time in Hawaii. Beautiful pic.
Bluefrog- good to see you back. This cancer crap is consuming that's for sure.
MsBrompton-can I have some of your energy please?
Kate-good for you for powering thru your day.
So for us Canadians we had an awesome Bluejays win last night. Let's hope they can keep the momentum going. We also have a new PrimeMinister, is going to be an interesting 4 years.
Question- I am still not feeling amazing. I am scheduled to have my last chemo on Thursday. I have always felt good for my infusions. This time I feel like I am starting at a deficit. I talked to my MO's nurse as he is away his week. She said as long as my bloodwork looks good tomorrow they will go ahead with the infusion unless I protest loudly. So do I go ahead with it? I haven't been in this position before. I'm scared of getting really sick this time. I don't want to end up back in the hospital. I know my bloodwork will be fine. My neutrophils were almost back to normal when they discharged me from the hospital.0 -
DeeRatz - I had this last week. Felt horrible going down to the hospital for chemo, husband said I was like a kid being dragged to school for a spelling test. I hated the infusion. But oddly, the day AFTER the chemo I wasn't as bad as the day before. And I've been in work today and yesterday - ie better than I was last week. So I don't think the chemo will necessarily tip you into an even worse state. It seems a bit more random than that.
Whatever you decide, may the force be with you!
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
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So ACS changed recommendations for initial screenings to age 55. And every two years following. There TOO many of us, just on this thread, in our 30's. This will affect what insurance companies are willing to pay for--my sister is 30 and will have to fight for a screening. This is wrong.0
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I think there are exceptions if you have a first line relative with breast cancer, for example my daughter should begin getting screenings when she is 10 years younger than I was at diagnosis. But, yes, Musogirl, I totally agree with you that this new "guideline" isn't helping anyone, I have zero family history (but I convinced my doctor to let me start having mammograms at age 35 AND my cancer was NOT found that way, I had a clear mammo 4 months before I discovered it, mammograms are not the end all be all but they can help and they should be used for younger women for sure).
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