Starting Chemo June 2017
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oh my gosh MSLin! I'm so sorry about your bone pain my gosh!!! I had it once with my AC. So much bone pain but different than the Taxol that is coming my way. So the CBD oil that you took was it with or without THC? I'm in Colorado so easyaccess but I can get the non-THC for free. I'm so sorry it's worse I was praying you'd experienced the worst already... Hope it subsidies very very soon. Big hugs!!!!
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Really HapB? Darn it .... I kept hearing how Taxol was better than AC but it certainly does not sound like it. Do you have any tips or tricks that worked for the side effects? Did you use those freeze booties and gloves during treatment? I heard they help with neuropathy. I have 12 Taxol treatments coming up so I guess I'll just see what happens. Thanks for the information it's always so helpful even if it's not what you want to hear
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MsLin,
Yes, Taxol was horrendous for me also in terms of joint pain and bone pain. After DD Taxol #1 infusion, I was even semi-suicidal from pain. Nothing worked for me. I begged and pleaded for Percocet. I barely passed DD#2, 3 and 4 w help of Percocet.5mg w 325 mg ibuprofen. Glad CBD tincture worked. Please do whatever makes you feel better.
4 AC was lesser of the two. (I had 3 bad days w AC vs 5 horrendous days w Taxol)
mimi
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well crap...the doctor and nurse and the chemo "pusher" told me Taxol is tolerated better than the red devil and now here I read that is not necessarily the case. Not only that, but it sounds worse. Yikes. Scares the bejeezus out of me now. I have my last AC dose next Thursday. You know I will be asking lots of specific questions about the Taxol. I know everyone is different, but the bone pain seems a little too common for the June ladies.
I'm hoping all of you find relief quickly.
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HapB - so sorry to hear this my doc told me taxol should be milder than AC.
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I just finished #9 of 12 weekly taxol/herceptin. I have found it to be tolerable, with minor SE. Day 4-5 some bone pain, but tylenol takes it down pretty good. I take a claritin everyday, a pepcid for heartburn, stool softener day 1-4. I have noticed being more tired the last 2 weeks. I feel very fortunate so far. 3 more to go, then just herceptin every 3 weeks for 9 months.
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PeachyJeanne,
Right?!?! I was actually looking forward to Taxol in a sick sort of way after AC... Now I will spend my next week researching side effect cures. I will let you know what I find and if non THC CBD is the answer I can help you with that.
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PeachyJeanne,
Right?!?! I was actually looking forward to Taxol in a sick sort of way after AC... Now I will spend my next week researching side effect cures. I will let you know what I find and if non THC CBD is the answer I can help you with that.
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The CBD tincture I have is without THC (or there is so little in it that it has no effect). It is rather expensive in WA, but at least I can get it without needing a medical card for it.
I didn't want to scare anyone with the Taxol bone pain. This is just my experience. My MO also said it is better tolerated, but she also only glossed over the bone pain side effect. I will say moving helps... when I was finally able to move. I did much better standing today than sitting or laying down. The pain comes back when I lay down. Great for sleeping. Sheesh
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Thanks for the reply! Where there any out of pockets cost for the dignicap treatment? I knew that Hairtostay can help with financing for those who can´t afford the treatment but I was unaware of that a major insurer like United Healthgroup reimbursed the treatment. Please let us know if the treatment works for you.
regards
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MSLin,
I'm not excited but so happy you did share your experience. No one informed me about the potential of such bone pain so I would have never known. Like you said they just sort of glossed over bone pain with all of the other side effects. Gosh I hope your CBD or something helps your pain.
Sending hugs and prayers your way
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Day 1 post Taxol number 1..since I am HER2+ they started Perjeta first for 60 minutes flooded by 60 minute observation..
Then Herceptin for 90 minutes followed by premeds which was 3 steroid tablets, I've pepcid, then benedryl...this was followed by the Taxol for 1 hour... thought they were going to do Zyrtec but when I heard benedryl I was very apprehensive because I have a low tolerance to benedryl and have heard people getting very dizzy from it. Well I did not tolerate the benedryl well at all. I was super shaky, fast heartbeat, dizzy, nauseous...so two infusion nurses sent emails to my doctor and I will be leaving a voice mail for him to change to zyrtec..all n all I was at the infusion clinic for about 6 hours or so. Took a nap in the car while hubby drove and went home to bed.
The infusion nurse said all was dripped very slaw the first time to make sure I did not have any allergic reactions to anything and that the following treatments will be dripped a little faster.
Today I feel fine just a little tired but nothing terrible..not sure what tomorrow will bring but we will see..I hope everyone has a great weekend,
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test
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Thanks Hapb you too
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From what I've read, weekly taxol (paclitaxel) is less toxic than every 3-week taxol (taxotere) because the dose is less. But every one of us is unique, and the SEs affects us differently. It could be that after the AC runs, your body strength is depleting, less gas in the tank per se, so the SEs multiply. I hope you can take comfort in knowing that the drug is doing it jobs by wiping out those microcells that could have/would have deposit in our bones.
Hugs to all!
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I had my third and final FEC (AC) chemo today. Now onto three sessions of Docetaxel starting in three weeks in August. Summer's going to be gone soon.
Had a long chat with both my nurses about cold caps and whether they really work to prevent hair loss. They're not available here in Canada so there's not a lot of information to go by. They did have one lady who paid thousands to have one shipped here from California. In the end the lady lost her hair anyway. They both said in all the years they've only ever had one lady that took over a year to get a full head of hair back. They were really worried that she would be one of the few people with permanent hair loss.
My peach fuzz on top is actually growing. Now how do you manage that? There's barely anything to cut. Reminds me of babies hair.
However, the both nurses recommended using ice chips in your mouth during infusion of Flourourcil. I tried it today for the first time but both previous treatments I didn't have any problems with mouth sores. Who really knows if it works or not! So far it does seem to be helping with taste issues. I also sucked on Werthers hard candy and excel breath mints today through the infusions which I forgot to do last time. Don't know if that's why last chemo I had such taste issues.
This is the first chemo session where I came home and went straight to sleep for six hours. Usually it's like the energizer bunny.
The nurses also recommended I dip my fingers and toes in ice chips for the next session of Docetaxel in August to prevent any numbing or tingling after infusion.
Will be so glad when this is all over with!
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Here's a pic of me getting my final cyclophosphamide pumped in. Right after this came the star of the cluster headache and of course I'd forgotten to bring the Tylenol.
Think I need a face lift and get rid of all that turkey skin under my chin. Not liking this getting older look and losing all the elasticity in your skin so much. Was looking through pictures from five years ago. Where's a time machine when you need one?
Happy thoughts! It's all good.
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Looking good, Pink. You are getting through it, girl. I do icing during my Taxotere treatments. It is reported to help with nails as well as with neuropathy. I have two more to go in August.
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PINK glad to hear you are getting through your treatments..I too feel like I have aged so much..I am 39 (I know young)..but I have always looked younger but now I have all of these wrinkles especially in my chin and around my mouth..I am going to try an acupuncture facelift after all this nonsense is over with..
MSLIN...been thinking about you and wondering how you are feeling now..I hope the bone pain has subsided and that you are feeling better
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hhuey - I'm doing much better than I was on Thursday. I took a muscle relaxer and Vicodin to sleep that night and was able to get some relief. I was able to walk on Friday and actually did some house cleaning. I had a group of my girlfriends come over that evening so company and distraction was welcomed. Most of the pain is gone now. I do get ocassional twinges in my feet and arms, but mostly only when I riding in the car. the 2 hour car ride out to my uncle's memorial service was not exactly fun yesterday. I do still have a bit of a headache, but it is a random shooting pain every so often.
Yesterday I also got out to do a little bit of yard work. It was more of securing my back fence so my chickens can't get to the dog area, but I was outside enjoying a bit of fresh air
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MSLIN glad to hear you are feeling a bit better and got to enjoy some fun time with friends and a little sunshine..I had my taxol on Friday, was tired yesterday just a bit but did some weeding in the garden..today I am a little sore (sore throat, a little achy, stomach a little weird) but manageable ..I too use cbd for pain and nausea..mine is cbd with thc that a family member sent me from california..it was donated to me and has helped tremendously with some side effects
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hhuey - I started like that. I had the sore throat and serious diarrhea and my stomach was burning. It was much like HapB mentioned, feeling flu like. My plan for next round is to add a little bit of thc to the mix.
are you doing DD taxol or weekly
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pink is my color, just to share with you my experience, I am in Canada too. I have been using the cold caps thanks to a forum in this breascancer.org. i have the same treatment like you. Nobody here in the hospital knew about cold caping. But they let me do it. I just finished round 3 of AC and although the shedding is inevitable i Still have alot of hair. 3 more rounds to go of Docetaxol i hope with all the money i have spent on renting the cold caps i can save my hair. But it doesn't work with everybody.
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Hey Pink, you're on a similar chemo schedule as I am although I was 4/4. I go in Tuesday for my last (4th) round of Docetaxol. I was pretty freaked out going into it because I had heard it was pretty rough. My SEs have been pretty mild...some mild tingling in my toes and my taste is a bit wonky. My nails are doing fine so far. I am more tired with it although that could be a combination of reaching the end of 6 months (8 rounds) of chemo and this bloody heat in Calgary
. I have done a 72 hour fast for all my treatments (48 hours before and 24 hours after). This may have helped minimize my SEs. Who knows but I'm not stopping now Hang in there! Living the dream in 2017
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Mslin I am doing weekly..and that's how my stomach feels..no diarrhea just sort of burning unsettled feeling..
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Thanks for all the encouragement. Just when I think I can't do this anymore somehow I'm in the chair and going ahead with it. Came close to backing out yesterday but the nurse was so awesome and calmed me down. Talked to me and of course an Ativan helped. I know my side effects haven't been even close to what others are experiencing but it wears me down.
Seems like every time I go for an infusion there's a loud talker with a whole family of people crowded around. This last one was partially deaf. Daughter kept yelling can you hear me. Finally my DH said yes I think we can all hear you! Thankfully she was gone shortly after that. A couple of people got to ring the bell and that's always great to hear that someone has made it through.
I've finally figured out the side efffects from this FEC only to get new ones from the Docetaxel starting in August. It's a fun journey? Well! Maybe not so much. I know I'm lucky in that I don't have as many chemo sessions as the rest of you. Kudos to all for what we have to go through.
Intragirl I don't know how I'd manage without air conditioning. My DH keeps our house like a feeezer locker so every now and then I go outside to get warmed up. Lol! I've heard about fasting but wasn't sure about it. Mostly I walk on the treadmill which really helps with the fatigue. Have you tried the icing of fingers and toes? Not sure yet if I'll try it. Day to day!
Vivanlu8 hope it saves your hair. The Cross Cancer is okay with it but they only ever had one person try it. I was okay with losing mine since I don't go to work now that I'm retired. It's only when I go out to a restaurant that I feel uncomfortable. Don't want to wear the hat but have come to be comfortable with my buff on. I figure it'll grow back. I'm kind of getting use to seeing myself with no hair although it's taken over a month to look at myself and wonder who that is looking back at me, 😂. On the plus side no leg or armpit hair for well over a month. That can never come back and I'd definitely be okay with that. 😉 I guess with the docetaxel I'll lose more. Although there's not a lot left to lose. The nurse said some people actually lose the whole nail. Now won't that be fun.
Keep sharing. Love hearing from everyone. Keeps me motivated and encouraged to keep on going.
💖💖💖 🤗🤗🤗 all around
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So glad to hear you are feeling better MsLin. It's a rainy day here in Florida. Hope everyone is enjoying their weekend.
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Hi Tara, no my insurance paid 100% but they did tell me if it didn't there was financial assistance available. It's a commitment and extremely uncomfortable but everyone is different. I hope you get it if that's what you want..
Big hugs
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Hhuey,
I prepared myself with 600 mg non THC CBD oil for my upcoming Taxol treatment. I live in Colorado and can get THC if I need it but was going to try no THC. Just soI can be prepared could you tell me or show me which one you received from CA? Thanks I've kind of worked myself into a tizzy about this and want to be prepared. So glad to hear you are managing this..
Stay strong and big hugs!
Wendy
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Wendeez
Honestly I'm not 100%sure..I just know it's from a dispensary my brothers friend owns and it was donated free of charge. It is a very thick tarry substsnce in two push vials each with 7 grams. My hunny bought me a vape pen specifically to burn a substance like that. I don't know the millagrams unfortunately but I know for sure there is thc in it. I'm sure at times it's the only thing that helps me through sometimes. It helps to set some of the side effects aside and keep on going with my daily activities in general. If I'm nauseous or in pain it helps a ton. If I am sad or in a funk I use some plain old thc o boost my mood a little.
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