Starting Chemo June 2014
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Pnak,
I'm not sure how far away from you your treatments are. A friend of mine did chemo for pancreatic cancer. She is no longer with us so I can't ask her the name of the group, but there was a group of people who drove her to and from chemo. The same people had someone clean her house once a week too. It was some sort of cancer support network. Do a little searching on-line or ask your onc about such a group.
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I had my first weekly taxol this morning. So far so good, can't complain about anything other than being tired from the benedryl they gave me. I usually pass out with 20 mg, they gave me 50 so I expect to be out cold from that. They gave me IV benedryl, steroid and pepcid. Nothing for nausea because they said most people don't need it, but if I do start to feel it, I should take my compazine. Trying not to take anything because the anti-nausea meds are probably the reason for my headaches that come and go. I will keep you all posted during the week with SE's from this. But remember, I also got Herceptin and Perjeta with the taxol, so if I do feel SE it could be from the other meds.
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hi everyone! am hoping to get some information on neutrophil levels. I went on TCH, started in June and just had my fourth and last one last week. What i am concern with is HIGHER than normal neutrophil levels. I did have a drop in my white blood and neutrophils and had febrile neutropenia on my first cycle, but subsequent to that (and a regime of ciproflaxin), i've had raised neutrophils.. consistently on the day of chemo for the last 3 cycles, it's been double the upper limit. My oncologist seems to think it's "normal" yet i'm really concern about it. Has that happened to anyone else?
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yen
I know when your neutrophils bounce back they bounce back quick. Maybe your body is overcompensating for the onslaught of the chemo and fighting back trying to get your levels up.
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my dr wasn't concerned with the high neutrophils, in fact he said it was a good thing, showed that everything is working as it should.
Day after first taxol and no complaints ...yet.
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Thank you Islandmama2 and Basia, my doctor did say it could be the "bounce back" too.. though with little information available on the internet i'm a little paranoid i guess. Also wondering how "typical" is such bounce back.. it feels as if i'm the only one experiencing it in a whole where neutropenia is a lot more common thank the opposite of it!
hope everyone's having a good day of minimal side effects and getting stronger and better each day.
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when we have our blood work done it is a snap shot in time. It is done to look at trends, if neutrophils are within a certain range we know the trend is for them to go up. It probably has lots to do when your blood is drawn in relation to your last cycle too.
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Hi ladies, Well I have some news good or bad however you want to take it. I am going to stop the rest of my treatments. No Taxol for me. I have thought about this long and hard. When I saw my onc last time he said to me I was pretty much healed...That the targeted therapy meds is what was going to really help, that the Taxol was for assurance. After that my gut told me not to continue. It was really strong, no self doubt, at all. I'm one to follow my gut intinct. I have a lot of pros and cons to this. The pros outweigh the cons. A lot have to do with my personal life. The last A/C through me through a loop HARD. I have done a lot of reading, soul searching, have talked to some of my friends and my family all but one support me. I read an article that really helped with my decison. http://www.whale.to/cancer/chemo112.html You may want to read it too. I should say that I will go in and share all my concerns and the article with my onc for his input, but I'm 98% sure I'm done. Most of you will think I'm stupid, but a lot of you on here have also gone through ALL your treatments and have had it come back WTH...I know most of you will continue and that is great and if you do, I found this wonderful site http://chemoangels.wix.com/chemo-angels-1/ check it out. You haven't seen the last of me, I will come back at least to let you know the 100% final decison after I talk to my onc. But I feel really good about this, the best I have felt through out my whole treatment. Check out the chemo angels site it's really cool the set you up with angels that will write, send you card and little gifts through out your treatments. Hugzzzz0 -
Laurais50, I hope all goes well for you - so many factors go in to our treatment plans and decisions, we all have to do what's best for ourselves. AC is TOUGH and you should be proud for making it through so well!
Haha Basia, "yet" being the operative word.
At Taxol #3 and have the Benedryl yawns. Around me is a woman graduating after almost 1 year of treatment and a newbie who has no idea what's going on, she missed the TLC beginning chemo class. She's very focused on the hair loss which I never really was - it's a pain in the ass wearing a wig to work, but it will grow back (I hope!). I want to go hug her, she's here alone and it's making me so sad.
Was going to skip my last Neulasta but changed my mind - don't need to get my counts up for another chemo, but I've been lucky to recover quickly and haven't had any infections. Don't want to mess with success. So two more bone pain shots, boo hiss.
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Laurais50, Is your oncologist going to give you targeted therapies without the taxol? What therapies is he/she giving you?
I hope your decision to discontinue treatment is your decision based on your gut instinct. I read the article you posted, and honestly not impressed with it. They sound like a completely holistic group of people that believe in natural cures for everything, but produce no real answers for treatment or cures.
It is your body and your life. Nobody knows you as well as you do and you should do what feels right for you. Chemo does not give guarantees (look at me going thru this again). You have to do what is best for you. Good luck with whatever decision you make. Nobody should make you feel bad about your choices.
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Good Luck with your decision Laura, it is definitely not easy on us with all this information regarding chemo vs natural, etc. Let us know what happens.
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First Taxol today. I am proud to share I had no bad reactions! The 50mg of benedryl had me sleeping through most of it! ...and most of the ride home and I'm pretty sure I'll be in bed early tonight!
I discussed this persistent wet cough with my oncologist. My chest has been clear this whole time, but my nose runs constantly and the coughing is killing my ribs and TE's. The verdict? He's pretty sure it is so.e kind of mucositis (the same thing that causes mouth sores) and that it will diminish greatly with the switch to Taxol. I sure hope so!
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Hello Ladies,
Laurais50 I know that your choice must have been a very hard one for you to make. Keep us updated on how things go for you!!!
CanuckMom Did your counts go up enough or did you have to get the neulasta shot? I have to say, taking the Claritin every day for a week helps and I don't get a huge amount of bone pain with it and for me it wasn't as bad as I was thinking it would be.
Pnak Look on the American Cancer Society website, they have a link for people in different states who can provide rides to appointments.
Sorry I have been missing. Had a tough time with infections, I get three or four infections each time. After the first chemo my neutrophils were 0.2 so Onc started me on the neulasta shot. Even with the neulasta shot I am getting them around day 5/6. Third time was the worst and I am just today starting to feel better and got out of bed and got dressed.. and washed my stinky body..lol I also have mastitis, chemo induced and that doesn't want to go away and my BS seems to have given up on it and said it's just going to take a while to clear up and she wont need to see me again until my first mammo in December, unless it gets worse again.
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It's hard to figure out exactly WHAT is needed. I have a support group that is "ready to go" but, I really don't "need" anything except a new body (of which no one is willing to trade). I had a hard week after my 3rd TCH - TCH is supposed to be easier than AC - I feel bad for you all if that's the case! I felt like crap! Sour stomach - full time. Loose bowels. My hands and feet feel raw and are peeling if I don't coat them in lotion and mentally I'm taking a beating. I don't want to have a full blown meal delivered, I don't want people cleaning my house (I know...this may be strange), I don't want to be useless. I just want the nausea to go away so I can get back to somewhat normal. Some of my weekly check-ins no longer check in (I keep in touch with them though) and others keep saying "You need to take it easy" while others wonder what I do all day. Pnak - I too struggle mentally!! I own my own business, do my own books in addition to another business's and I couldn't get a statement to balance!! After I input everything!! I forget things - I have to walk around with a post-it note pad with me and tell everyone to remind me on things. Frustrating! I really struggle with the longevity of this treatment. I feel your pain, everyone! As trite as it sounds, hang in there!
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hiking - I can so relate to everything you just said! My hands are peeling for the 3rd time. I am going for my 4th TCH tomorrow and I feel 100. I've gained 18 lbs and I still have all the stomach problems, heartburn and I can't seem to pick my feet up because my muscles seem to be deteriorating or something I've fallen 2 times last week! I am sad and mad I am not used to being so worthless and I can't think either my thoughts evaporate right out of my head! I try so hard to be happy so my family won't worry but I am getting depressed I want this over I want to be me again! I don't know what to tell anyone to do to help there isn't anything.
I wish I could meet each and everyone of you women because there's one thing I know to be true you are all tough, wonderful and wise beyond your years!
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hiking, I am so sorry you are struggling so much! I get it - I am at the point of just wanting functioning me back, I'm very independent and feeling like shit all in the name of getting better is terrible. I am pretty closed in too, I think 1) it's hard to ask for/take help and 2) I don't feel good and interaction with others means I have to put on a facade of sorts. My sister wants to fly up and take me to a resort for a spa weekend after I am done with and It sounds way to overwhelming - I anticipate spending a few months getting my life back. Silly! I handle accounting and HR for work and I have no idea how I've been pulling it off...not only is it taking me twice as long I'm having to go back to see if I have completed tasks because I can't remember if I did them. I've resorted to saving my crossed off to do lists.
For nausea, I was pretty sick on my #1 AC and I was given Olanzapine which is indicated for psychosis but is recently being used for chemo related nausea. It worked for me! I have not been sick since, I guess it's worth asking about. I am also doing acupuncture through my center and am considering the yoga class...the acupuncture is helping my brain more than my body (except she somehow stopped the annoying dribbling after urination, sorry TMI but it was driving me nuts!).
Jdmac - who knew just taking a shower would be a major accomplishment in our day lol!
Radical, I hope the rest of your Taxol days are good! I had number three yesterday, and so far so good but NeuNasty shot is today so I'll get back to you
My mucus is non-existent on Taxol but the swing to dryness is substantial. Lots of Biotin mouthwash and bag balm/coconut oil on my hands and feet. And Ocean for my poor nose.Have a good Wednesday all!
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All the SE from TCH will wear off quickly once you are done. I want to say within a month of finishing the TC portion I was getting back to normal, or what became my new normal. I still had dizzy spells here and there, but nothing too frightening. Herceptin on its own didn't interfere with my daily life, the worst part was a runny nose and a persistent cough.
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Basia I'm sorry I was wrong, what I meant was the tamoxifen is what is really going to help.I wish you all well. It sounds so brutal all of this. It sucks to go through it alone, not so much alone, but with people around you that are living life. I am really proud of all of you.
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Laura, you need to take care of yourself and your family. Whatever you choose, it is your choice and you have to be comfortable with it. I know many women who are on tamoxifen only and they are doing great. And I am sure you will be fine too.
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hikingandhorses my third TCH was the worst so far, and I am just starting to feel a little better, as number 4 approaches. I am having a rough time with it too. I have a close friend who is going through chemo for Hodgkins right now and she hasn't lost her hair, she doesn't get sick, has hardly any side effects, except some pain with the neulasta shot .and I feel like a big bald cry baby lol infection after infection, nausea and throwing up, agonizingly sore mouth and teeth, swollen legs, poop issues, weak and out of breath... I feel totally useless a good portion of the time now.
My hands are not peeling, but they feel weird, and the skin on some of my finger tips feels leathery, like when you burn yourself and the skin gets thick as it heels. My nails are starting to hurt now.
Agent99 I try to be happy so everyone around me feels less of a burden and it's hard sometimes to keep it up! I forget things all the time and mix words up, make new words etc. I am always forgetting what I am doing, or saying and sometimes I just even find myself sitting staring at a wall or something and realize I have been doing it for a long time! Good Luck with your 4th TCH tomorrow! Scary falling like that.. don't forget to tell your Onc.
Bow1965 YES! showering is a major accomplishment! LOL Hope number 3 isn't too hard on you and the NeuNasty shot doesn't cause too much pain for you!! ( I Like that name, NeuNasty lol, how appropriate)
Basia Good to know the side effects from the TC portion of the TCH go so soon after stopping!
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jdmac, I don't remember which one, but it was #3 or 4 that was the worst and then it got better from there. I think it was getting over the hump that made it all seem easier to handle. You are almost done with it, it will get better. Just like with AC, the 3rd one felt like I was dying and then the last one was easy in comparison. Hang in there, it will be over befor you know it.
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Basia, Thank you.
I have mixed emotions, like half of me is "YAY halfway through", the other half of me is "UGH.. three more to go" LOL but that's reassuring to know 3 or 4 was the worst and then it got better.0 -
Laura, you hang in there and make the decision right for you!
I am at day 7 after my first Taxol. I ended up calling Sunday for pain pills. The pain and the weakness were a surprise, I did well with the Neulasta shot so thought I would be ok. Ha! Still feel some pain. But decided today to not take the hydro/acte. I did borrow a cane for stability. I feel like an old woman but don't want to fall at work especially. I also need my brain back everything takes forever at work to do. I am also getting grumpy! Bottom of feet and my fingers are numb!
I hope all of you have better days ahead!!!
Good thing we can vent here!
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Today is day 4 from taxol, perjeta and perception. So far things have been good, I had a ton of energy yesterday. A few aches and pains but nothing serious and they passed rather quickly. Biggest issue was diarrhea last night, I was up most of the night with stomach/intestinal cramps. But once that passed I was able to sleep. It was so cool and windy here last night it was the first night in many months that I didn't wake up from hot flashes….how refreshing!
Hope everyone is well.
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ok, my nail beds are absolutely killing me! My pinky toes have hurt for a few weeks, but the last two days EVERY nail bed on my fingers and toes has been painful to the touch. Any suggestions?
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Number 4. I have gained 21 $&$@!!!! Lbs! Yikes
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you loom great agent99!
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Radical, have you been icing during the taxol tx? Sorry no advice to give, not there yet...
JDMac, nice to hear you are hanging in there. Sorry it has been so hard though..my mind is not the same either...always forgetting words, names, etcetera. My counts did go back up, so no Neulasta for me, thank goodness!
Looking good Agent99!
All this taxol stuff is scaring me! I thought it would be easier than AC!
I am waking up each morning with a bad headache that goes away once I'm up..anyone else have this? Still sore ankles and feet...energy in the morning that is gone bye the afternoon. Thinking I should ask for a port but it kind of freaks me out....my last AC is next week and then I start weekly taxol so that will be harder on my veins I think.
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@Agent99 I also gained almost 20lbs. I had my thyroid removed in April so that hasn't helped. Can't walk like I use to either. My last chemo is Monday and I'm hoping to try again with walking and eating good in a few weeks. I look like I'm pregnant as I always gain in my belly first. Grrrr
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Canuck
I want a port but I started chemo the day after I saw the onc so I got a PICC. My surgeon said that now that I have a PICC he is happy for me to keep it. I am on the fluffier side and he said I have "lots of tissue" there and would be hesitant to put one in LOL. I think he got burned badly when a nurse accessed a port incorrectly and infused the chemo into her tissues accidentally. She ended up needing skin grafts, etc. however, that is definitely not the norm! Ports are lovely! PICCs arent bad but they are definitely more maintenance than a port. But no pokes with a PICC. Nurses put them in at my hospital and they are really good at it!
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