Starting chemo February 2018
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I'll call the office tomorrow then. I looked a little online today and I thought I had the hands and feet syndrome early stage because of the burning sensation. I see my MO Wednesday anyway. I'll let you know. Thank you for your input.😊
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moth - sorry you're back in the hospital again. Is the place you go at least comfortable? Obviously it's not as good as home but hopefully not too bad?
Well I've got a little bit of good news. My RBC has finally started to come back up. I'm still anemic but I've turned the corner it seems and it's headed in the right direction.
Unfortunately MO said based on my worsening nail pain I might lose my fingernails.
The first three on each hand feel like they've been smashed with a hammer. I've been having trouble opening bottles and containers that require any pressure. She said it's not certain that I will but if you've got the tenderness or discoloration in the nail bed (the ones that hurt went white at first and now have red spots) then it's an indication of things to come. But she also said since the pins/needles was only bothersome the first round then the neuropathy's not likely to be permanent. Also asked about my increasing night sweats that are starting to happen during the day too. For some reason I got it in my head that they were caused by the steroid but apparently that is the chemopause. Ugh. This hotflash business is some bullshit. I'm going to order some little handheld fans to carry around. I'm not going to make it in the Oklahoma heat in about a month. The silver linings here are A) I guess if my ovaries are shut down then I'm not churning out as much estrogen and
being bald makes it easier to cool down when I do get hot! 0 -
Moth-so sorry your in the hospital. Are you already using nuelasta or nupogen shots? My friends neutrophils also dropped to 0 on treatment. She still was able to completed the remaining treatments after her levels came up and it didn't happen again.0
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Hi all, getting ready for surgery next week. Still recovering from last AC. Anyone else get a sore dry throats and tongue? Taste buds seem damaged too now. Drinking lots of water without much effect. Anyone else experience a dry, sore throat? Any tips
CBOK-I'm experiencing hot and cold flashes day and night too. I guess this means I'm in menopause because I haven't had a period in 2 months. Unfortunately it wakes me up every few hours at night. I feel a little sad about going through menopause at 44, but also take comfort knowing i have less estrogen for the cancer
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today is my 7th day, i was pretty much feeling good till day 4 after my first docetaxel but 5th day onwards i had body pain which is almost gone now.. but today afternoon i had a small rash on my lip & scalp it looks burnt black or brown and red which is increasing now bit worried my er dint pick the call.. so m planning to meet doc tmrw morning.. so worried.. have any of u experienced this ?
Each time i hope its better and it is torturing me more
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Hello Walden, I am experiencing sore tongue and a little bit sore throat. I thought that drinking protein shake type drink such as Ensure would be the solution but I just vomited it. It is excruciating to eat. I got a magic mouth wash but this thing expired after 15 days of being prepared. I'll ask for a new one tomorrow when I see my MO.
I haven't experienced the hot flashes. I am almost a month late so I am guessing that I have entered chemopause but no disagreeable SEs to that.
Tomorrow I'll know if I have my first round of weekly taxol. I called the centre regarding my burning sensation on feet and fingers and it seems that I have mild hand foot syndrome. It might postpone my treatment. I'll see...
Aanoliver I am sorry but I cannot help you as I haven't started taxol yet. Hope the rash will fade away soon.
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Hi everyone, thanks for the well wishes.
I got out last night after 5 days/4 nights in hospital. Yes, I did have the neulasta shot this round. It didn't stop the neutrophils from crashing but they recovered way quicker than they did on the grastofil.
I was feeling so good by yesterday morning that after I watched the sunrise (I was in a room with a gorgeous view) & did my morning meditation, I put on some of my dance music and had about a 20 min dance party in the hallway (so as to not disturb my roomies). So imagine a totally bald woman in hospital gown, face mask, and purple crocs, bopping along by herself with headphones. Made my nurses laugh!Life's too short to not dance when you can !
So if anyone is feeling up for it, we can have a virtual dance party. Here's my jukebox selection
I meet with my MO tomorrow and I'll find out for sure if we're doing Taxol on Thurs. I sure hope it's easier on me than AC has been. SO glad to have that behind me.
I'm going to start reading backwards now & catch up on everything I missed. (wifi was wonky in hospital)0 -
Ok, I'm convinced they are trying to kill me at my work 😊 they keep booking me with no breaks, lunch, nothing which I do want to try to get my clients in but I am so fatigued from the chemo at this point it is truly killing me. Thank goodness I only work every other day and have a day to recover. So I get my 3 month echo tomorrow to be sure the herceptin isn't taking a toll on my heart. I so want to be done with this chemo, I know only 2 more, I can do this. Anyway have any of you had weird food cravings? I never ate fresh pineapple before chemo but I now crave it daily, there must be something in it I need, "Fresh pineapple is the only known source of an enzyme called bromelain, which may alleviate joint pain and arthritis, reduce inflammation, inhibit tumor growth, and shorten recovery time following surgery"
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I definitely have food cravings, pasta, kiwi, fish, and more. These were never must have foods for me before. Each time it happens I discover that the food contains something that is particularly useful to my body due to chemo. Pasta known to soothe tummy. Kiwi counters constipation and is high in vitamin C which helps with iron absorption. Fish is a good source of iron, and protein. I think your body knows what it needs even if you dont at first.
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Hello all, I have been craving bacon but total disappointment when I finally ate some. It has been very hard for me to eat during AC and I lost almost 10kgs this last 2 months. I have been weak all the time probably due to malnutrition.
Moth, I am glad that you are feeling better. I will listen to your mix later and why not dancing. I can visualize you in your hospital gown. It must have been funny!
Have a great day wonderful ladies
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Hi Lollotte19 - I'm sorry to hear your having trouble eating. Just had a couple thoughts you may find useful. I'm guessing you've tried things like ensure and home made smoothies. Not sure where you are getting treatment but often there are nutritionists on staff that specialize in helping cancer patients find solutions. Sometimes it's a phone in service, so you don't need to leave home for advice. I'm using a delivery service for groceries that can also deliver great fresh meals, or smoothies which makes things easier when I need it. Not sure what area youare in but I'm directly there are many companies doing it
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Hi Ladies!
Moth - I’m so glad you’re feeling better and out of the hospital. I can just picture you dancing in the hallway! Awesome! Loved it! Loved the music video you posted! Made me dance too!
Walden - AC totally changed my taste buds. I did have dry mouth and therefore wasn’t able to drink coffee anymore (it made my mouth even more dry). Water didn’t taste too good either - only with lots of ice to make it super cold or cold sparkling water.
Lolotte - About hand & foot syndrome - sorry you have It! I hope you feel better soon so you don't have to delay your next infusion. I got a mild version of it after AC #3. I got these blisters/bumps on my feet & hands which itched and were painful to the touch for the first 3-4 days. Then they stopped itching and now about 4-5 weeks later they are popping like old blisters. The interesting thing is that it was only after AC#3. It did not happen after AC#4 or Taxol #1. Hope yours goes away quickly.
Deb - Now that I’m on Taxol I definitely have food cravings. In AC I was nauseous all the time so I could barely eat. I had to force myself to eat. But now, no nausea so food is my friend again. Lately I’ve been craving tuna salad sandwiches. I was never a big fan of those, but now they are so yummy.
cbok - sorry about your nails! I hope they don’t fall off. 🤞
Aanoliver - sorry to hear about your rash! Definitely see your MO about it. Hope it goes away soon
I’m on day 3 post second Taxol. So far so good. My biggest problem is again sleeping. I am tired but keep waking up every couple hours at night - either I’m hot and sweaty or I’m cold and shivering or I need to go pee. So far very Minor muscle pain. Very manageable. I hope it stays that way. 🤞
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Yeah (mix feelings here) I can proceed with taxol this Friday. I will do semi-icing (I am a person who hates cold so it will be as long as I can support it), B6 100mg, hair skin nail multi vitamin 2 third of the daily recommendation on the container, and L glutamine 20gr per day. Re L glutamine I found one study for DD taxol for breast cancer patient using 10g per day but people in the weekly taxol in 2012 recommended 30gr. I will go for the middle.
pbello knock on wood I don't have blisters yet. I have been applying cold for 20 minutes and used cetaphil cream and another one no brand given by the lady who conducted the feel good class that can be used to calm irritated skin. I guess it has helped prevent blisters. My MO said that hand/ foot syndrome has nothing to do with neuropathy and having it doesn't mean that I will have neuropathy. I so want to believe him.
I had difficulties eating because of nausea and stomach pain throughout the last 2 months and also because of mouth sores. Brushing my teeth and the smell of tap water made me gag amd sometimes vomit so sometimes I brushed only once a day, which might explains why I have mouth sores. My appetite is also reduced. Yesterday my stomach wasn't happy with the Ensure drink but my MO told me today to try 1/3 every 30 minutes. So I am trying that now and let's hope for the best! I am a little sad about this gigantic sore that is covering the right part of my tongue on the side because my taste buds are almost back and I can enjoy the flavor of the food better.
Wish everyone SEs free or minimal week.
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- hi All,
- Sorry to hear some of you are having side affects. Hoping all of them go away soon and or are manageable. Why would they tell us this stuff is better than A/C ?
- I had my first today of THP and just got home. I wasn’t given any steroid to take home. No after meds at all being told there will be no side affects but the D. Well yes the D happened while there and again just made it hone on time. And my stomach is rumbling so guess I’ll take Imodium.
- Only think I feel is a clearer head than with the A/C.
- The Benadryl did knock me out. They told me when I get the taxol only I won’t get premeds because it’s not needed.is this normal ?
- So what do I do just wait for the side affects now ?
- Should I go to work ? I don’t know what to expect so guess I have to take it one day at a time.
- Kept sting to myself, ok 1 down 11 to go, then that didn’t sound good so I said to myself on began first round and instead counting in rounds of 4. Makes me feel better.
- Hoping for no issues of course.
- I don’t get how it takes time to hit us. In my mind right as we get it should be the worse of it if it’s really leaving out bodies. It’s toxic, why the heck does it wait days to attack ?
- Well. I choice but to wait and see.
- Stay strong ladies
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CBOK - i spoke to my MO about my toenails and fingernails. I was experiencing same issues as you after round 1 - could barely open anything and they did feel like a hammer hit them. She said that with Taxol you don't usually lose nails - that is more likely with taxotere. But she did reduce my dose by 15% for round 2 and I'm on day 6 and so far so good with the nails. That is not to say that I'm not having the bone pain again (from Taxol, not the neulasta). I am but she has rx'ed me some meds so I'm managing it to a degree. Hope you feel better soon!
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did bloodwork and saw my MO today. My neutrophils and platelets are pretty low but barely squeaking into the range where they might go ahead with a reduced dose. I have to go in super early tomorrow to repeat bloodwork and then we'll see.
I have to say, I'm suddenly super scared and worried. It seems just so overwhelming to be undertaking 12 more weeks of chemo when I still feel I'm reeling from the AC and the febrile neutropenia and the 5 days in hospital on iv abx.
I'm suddenly very tired & down, and also totally unprepared for taxol and worried about side effects.0 -
Moth, please tell your MO how you're feeling, that you're worried about it all, no need to over do your treatments. I hooe things go well for you tomorrow.
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its so weird guys .. i was feelig super tired with the rash so my mo decided to do the blood work & guess what i never had such high counts in my blood work ever always my chemo was delayed or i got lots of shot of neupogen .. but this time neulasta is really working.. for the rash on my lip & chin she gave me lactoc acid bacillus capsules & mouth paint for the sores .. also my hemoglobin was 8 it is now 10.5 .. i ate spinach,pumkins, dry figs , dried apricots & dry prunes also few almonds & walnuts daily.. so if any of u r struggling give it a try .. since it worked for me
but worst part is still i feel so weak.Moth tc hun.. dont worry dear meet ur mo asap.. even i was feeling the same way .. here i am 4 down .. time will fly quick .. sending you love.. hope to see u better soon
Pbello- glad to know u r doing well..touchwood let it stay that way..
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Mouth, I am starting taxol tomorrow and I am also scared. To prepare I bought L glutamine powder and B6 plus a complex vitamins hair skin nail. I will also take the claritin tonight and several days after infusion to see if it counteracts the pain some are experiencing. I think I read somewhere that the pain was due to overactive bone marrow. If the principle is the same as the neulasta shot then claritin should work for me. It is a lot of medication but if it helps to prevent some SEs then I'll so it.
Wish you all wonderdul ladies a great day and good luck for the ones receiving their first taxol today
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Lollotte I know how scared you are. As I mentioned above I was so afraid due to already suffering from neuropathy. I had my first tacos, Herceptin and prejeta yesterday and I feel so good today. So good I didn’t go to work in order to enjoy the day and do stuff at home that I’ve neglected. Just a little bone pain, nothing to even merit a Tylenol. I don’t know what the following days will bring, but for now I’ll take it. I did get the big D and I didn’t wanna take anything thinking that would keep the poison inside me.
Be strong.... you got this. Hoping you don’t get any bad side affects. Let us know
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Hey guys, my MO decided to delay me a week. My platelets rose a bit but the neutrophils are still low and he decided to delay & hope that next week we can go full dose, rather than starting with a reduced dose on a compromised system.
So I get a week off. Pretty happy now
Fortunately my anxiety last night was shortlived and soon after I posted I went to bed & slept a solid 8h.
For this week, I'm going to focus on eating well, exercising & playing with the puppy. We're finalizing her adoption this weekend
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p.s. thank you everyone for the hugs & love & support.
Lolotte - be brave .... so I can copy you next week0 -
indawood- I just returned from 9 fabulous days in Utah. Never thought about cancer or chemo in 9 days. But back to reality. Thanks for your clarification regarding the difference between taxol and taxotere. Round 4 of chemo is tomorrow. I'm not looking forward to it but I'm looking forward to it being over with. I had no bone pain or any type of stomach upset with my chemo but I've had horrible chemo burn on both arms my butt and once on my mouth. My toenails and fingernails are splitting. No neuropathy. The burns disappear within 7 to 10 days but they are ugly. My taste buds were destroyed. Strangely ,approximately two weeks ago my taste came back. I was able to eat my usual Foods and even have a glass of wine with dinner. YEA.
Moth- every now and then I bitch and moan. Overall, I feel very fortunate. I hiked 5 miles daily in Utah. The first two to three days I was huffing and puffing hiking the easy trails because I was not accustomed to that altitude. Congrats on the puppy. It was so good being away but I missed my fur babies. Have fun with the new baby.
Pic : Jo and my 83 yr. old Mom ( shorter one) at Snowbird in Utah. She loves the outdoors. We are from South Florida and the 42-degree weather was an eyeopener. So much fun.
Mom unhappy that I posted this pic because she was not smiling. Mom said she was smiling in all of her other photos but this was the one I had to choose. LOL
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nice pic Jo. The sky color is incredible!
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lolotte19- the sky was so beautiful and blue. Good luck with the taxol. Try to remember the SEs are different for each of us. So best of luck and be positive. It's always tough when you're starting something new.
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hi ladies hope this finds you all doing as well as can be expected and your side effects are minimal. Now Excuse me while I whine a bit. I was feeling so good yesterday was headed into work I have steps I have to go up to get to my work and at the top of the steps I felt a big pop in my knee and my knee went out. I went ahead and worked what I could of the day remember I stand for my job and walk and it was real painful and tough getting through the day but I got through came home iced my knee, I slept pretty good but I still cannot walk on my knee the pain is so bad I can't believe it if it ain't one thing it's another. I should tell you all that both of my knees are shot from being overweight and doing what I do for a living. Ok thanks for letting me whine, I was so bummed yesterday I wanted to cry. Going to the dr this afternoon for my knee like we don't see enough Dr's right 😊
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Deb, so sorry for your knee! You have been through a lot this past 3 months. I hope this is nothing serious. Let us know what the dr. said.
For me infusion was uneventful. I still have stomach pain and a huge sore from the AC. I will live one day at a time and note my SEs.
Cheers!
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Moth bless your heart hoping your white counts stay where they need to be. Have a blast with your new fur baby while you are recovering.
Deb you have been through the wringer that is for sure hope your knee injury is minor.
Indahood so glad you have chosen to continue with updates.
Aanoliver we all deserve to enjoy a good day
CBOK and butterfly lily sorry to hear about your nail pain I so far have avoid that SE when did it become noticible for you?
Those having issues with mouth sores have you tried eating cottage cheese? I can not find the thread again however there is a discussion about a dentist who found out that eating 2 TBS. of cottage cheese daily would help prevent and also clear mouth sores. I use the salt and baking soda rinses and eat cottage and fruit as part of my breakfast every day. The only mouth sore I have had was actually my fault I got a cut on the roof of my mouth from eating a tortilla chip and it stabbing the roof of my mouth. With the cottage cheese it was gone in about five days and did not get any larger as my MO feared it might because of chemo.
My personal update. I am done with taxol number two. So far I have found taxol is in many ways easier. First the horrid nausea I had with Ac that would last almost 10 days did not happen I had some mild nausea for about a day and a half. Some minor aches on days three, four and five did not need to take anything for it. Food tasted bland on days three and four the complete oppisite of tasting salty. The only SE that is about the same is the big D mine is nothing like Debs however as it always hits within 30 minutes of eating a meal so I can at least prepare for it. I am icing my hands and feet and so far no signs of neuropathy however my MO did say it sometimes hits after the fourth or fifth infusion the worst. The fatigue is for me worse than AC especially on days four and five both days I slept counting naps about 14 hours, it felt like I was in a river of molasses and trying to swim upstream. My limbs just felt so heavy. I still get short of breath easily MO said this is more than likely still caused from the AC as some things caused by AC can take up to two months or longer to resolve so she feels I will see improvement with this each week. To be safe however she is going to have another echo for my heart done along with a cat scan.
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Deb- and I'm really sorry to hear about your knee popping. It's especially difficult when you're on your feet a lot. As much as possible try to keep it iced and elevated. Plenty of rest if you can. You have been through the ringer. Hopefully this will be just a little bump in the road and it won't be anything serious. Best of luck to you.
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Hi all,
Just a comment about cottage cheese. I know this is not much to go on, but I ate cottage cheese at least every other day for the protein boost. Allthough I found A/c very drying to my skin, mouth and throat I never had mouth soars. The protein benefit alone is good enough reason to include it in your diet, if it helps with moth sores then that's icing on the cake, so to speak
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