Chemo Starting September 2018
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BT39 thank you
I will definitely reach out and its great to know how good you feel about your decision Tigerlily thank you for the recommendation!! Will look up the book. I love reading memoirs.
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Just arrived home from my last chemo (12 weekly taxols)....! (After a quick detour to pick up sick kid from school). In a nutshell, I had no terrible side effects, aside from a bout of hives after 2nd infusion, and kept 99% of my hair (cold capped with paxman). I realize more shedding and side effects may come now that I'm done... time will tell! Tomorrow is my planning appointment for radiation. I'd considered skipping radiation and getting a double mastectomy instead, but when I met with my surgeon, he basically told me I'm crazy and talked me out of it. Still not sure what I *should* do, but I'm going to put my trust in my doctors (for once : ) I thought the end of chemo would never get here, and now I'm done!..... phew!
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Brink - if you're doing AC every 21 days there's a good chance you can do some real moving in the third week. I even got good walks in on the second week, but had to dramatically scale back my plans to run through chemo as I just get so out of breath with my low blood counts. I have high hopes those will come back up after I finish AC.
Sunocean - I went half-flat (R mastectomy with no reconstruction). As BT39 says, it's strange how it's really not that noticeable and definitely not a focal point. But then I've always had small breasts so they were never going to be the first thing someone noticed. Nor, it turns out, is having only one!
I am gearing up for my 4th and final AC today. I have already done a bit of crying feeling sorry for myself because I know what I'm in for, but it is the last one at least. And for a bit of a laugh - I told my husband my skin is so dry I feel like I need a bucket of coconut oil. He took me at my word:
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Reading through the last many posts, I'm really struck by how there is no right or wrong decision about what surgery to have and whether or not to do reconstruction. I'm glad we can all be supportive of each other in our choices - I really value that about this group!
MandM - Yes to the hostage question. I tell people the medical system owns me right now.
I'm 18 day PFC and am watching and waiting for some sign of hair regrowth. Nothing yet - I still have baby bird head. But no sign (yet) of my nails lifting.
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Dumb question here— when people say XX days PFC, are they counting from the final infusion day? Or are they counting XX + 21 (or whatever the cycle was)?
Getting over the hump from #4. Soooo excited to finish by the end of the year!!! I can see light!!!!!
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MtKushmore - I was assuming PFC was from the last day of chemo. I hope so, because I've been saying Im 19 days PFC. My chemo cycle was 21 days, too, and I've felt myself bracing all week for the next round when it's not even coming. I think my body hasn’t figured out yet that I'm through. SO glad you'll be done before year's end!
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BeingPositive - Although Taxol hasn’t been too bad, I do have this feeling of being slowly beaten down. I can’t wait until my heart rate goes back to normal so I can do some cardio exercise. I think that will help me feel more normal again. My eyelashes have started to fall as well. I wonder how much people would notice it.
beeline - I'm afraid I'll be on the 2 weeks x 4 schedule for AC so I don't think I can do much until probably April. Anyway we haven't seen any houses that we both like so we'll wait until next year for now. It's so funny your husband got the bucket of coconut oil. That's totally what mine would do!
Despite all it feels good to be done with Taxol #12!! I’m thankful I can go through the holidays without chemo. Last year, who would have imagined what we would be thankful for/wish for this season.
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hello everyone,
DAY6 of Taxol and still hurting a bit. It seems like my better time is in the morning. Trying to work through and it’s taking it’s toll. Very dizzy and out of breath at the end of the day. I lashes are starting to go, eyebrows will probably be next. Whatever. At least it’s a short week this week although I’m just having a small Thanksgiving and skipping the big family party. Too many sick little kids and early winter colds to risk it. The isolation is a little intense- not always in a bad way. I kind of craving it sometimes, and sometimes not. My fellow was sick this week and so I made him stay away. Had to go through this first round of side effects by my lonesome. The neuropathy seems to have resolved itself, A few twinges here in there, like someone’s got a voodoo doll of me and is sticking me with a pin every now and then. I am having some muscle pain and my feet are really weird. When I’m wearing my shoes at work, feeling like my big toenails are about to come off and I kind of waddle around like a duck. Thinking about ordering extra wide shoes that are a half size too big . People want to hug me and it’s so stupid when I tell them not to. Some of them react like they’re so offended. I don’t even hug my mother these days.
Has anyone tried gabapentin? How about acupuncture?
I feel much differently about reconstruction now that I’m down the road apiece. I’m thinking I’m gonna stay half flat. Maybe get a cool tattoo. You’re right it’s much less a focus then I thought it would be. My Masectomy site is really healthy, this may be different after radiation. From what my lymphedema therapist tells me it will be considerably different. I’ve yet to consult the radiation oncologist- getting a second opinion from a heart surgeon on December 5. Once I have that I will get the radiation scheduled.
I hear you about the light at the end. My last chemo treatment is December 27. I’m so looking forward to getting off this crazy carousel. I know that there’s still many challenges ahead of me but at least this slow poisoning will be behind me. Hoping everyone has an appetite the dayafter tomorrow. Hang in there!
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Thanks @wanderweg! I hope so too! Im looking forward to counting UP instead of down for a change, and I’m excited to see what a week 4 will feel like, haha!
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thank you all who have responded about your stories of reconstruction. Its been so helpful. I met with the oncology radiologist and she confirmed I will need radiation total of 25 sessions and recommended to hold off on reconstruction for at least a year. But part of me just wants to go flat and I think that's what I'm going to do. At least these way the surgeon can leave me flat and I can avoid those dreaded dog ears if possible.
I am on TCHP and I think I'm in the minority here as many of you are on a different regime. I got round 4 of 6 today and I was a little bummed because they had to further reduce the carbo chemo drug to 71% instead of 100% due to my liver panel being high. I know its for my own good because we definitely dont want to destroy my liver but at the same time I get worried if a reduction in the chemo drug will cause the cancer to not be killed as much as it needs to be. I hope this makes sense. But I'm trying to keep positive given my tumor cant be felt anymore and I'm praying it all works out.
My doctor also upped my neuprogen shot from 5 to 7 days since I'm getting low white blood counts and also horrible mouth sores. Ugh. I have two more to go. Cant wait for this to be over. Thank U all for sharing your stories. Helps so much.
And I love the huge jar of coconut oil. That's hilarious. Not sure if anyone uses Cerave that's helped so much for dry skin and also First Aid Beauty cream. Highly recommend those.
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Hi ladies,
Day 1 of DD Taxol #2 of 4. Got to talk to MO more today about "Taxol Acute Pain Syndrome". It's rare, but he is well aware of it and said that he's had patients who have refused Taxol after the first infusion. I'm not going to quit, but I'm going to be much more proactive about pain management. He did not hesitate to prescribe Percocet since I'm willing to continue. As with AC, after the initial onset of symptoms resolved, I had several very good days. I was able to do another Spartan on Sunday, but I'm done now until after radiation, hopefully by the end of Feb.
MandM, about Gabapentin, I have used it effectively for nerve damage after surgery but sped up the weening process due to side effects. At 900 mgs, headaches, crossed eyes, confusion, etc. Now I use 300 mgs for hot flashes and night sweats, and it works like a charm! I don't know what it would do for neuropathy. I haven't had any symptoms yet, but perhaps it's due to Gabapentin? I'm also down to about 20% of my eyelashes, darn it! One of my tasks this weekend is to figure out how to wear false lashes.
Time for bed! I hope you all have a great Thanksgiving weekend doing as much or as little as suits you!
xoxo
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I'm on CBD oil as well. There are numerous studies (unfortunately not many in humans) that show the anti-cancer effects of CBD. Wish this stuff was made legal many years ago so we would have human data by now. I live in New York and obtained a medical marijuana card after my diagnosis. I've been taking 5mg per day which I bought from MedMen. Started 2 weeks ago. Thinking of upping the dose a day or two before chemo. The pharmacist at the dispensary didtell me CBD has a cumulative effect and it has to be taken for a few weeks to see results. I'm starting 4 rounds of TC on Tuesday. Hope it helps.
I'm a pharmacist as well. It's hard to deny that CBD is useless when you see all these peer reviewed studies. Hope we have more human data soon. You can go to projectcbd.org which gives you the links to all the CBD studies on pubmed. They even break it down by different cancer types, including breast cancer. This thread doesn’t let me post the link for some reason.
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Hope everyone had a great Thanksgiving!
M-and-M37 - I have been using Gabapentin for neuropathy (900 mg/day) and basically it makes the dull pain in my hands, arms and legs go away. The numbness in my fingers still remain though. Acupuncture has not stopped my neuropathy from progressing, but maybe it slowed it down a little. I'll continue trying it in the coming weeks and see if it helps my recovery.
For those who have never tried acupuncture, you may need to try out a few acupuncturists before finding the right one. I had one who cause me to bleed rather unnecessarily from my forehead, another who didn't do much, and then finally one who would put the needles in deeper to help my SEs more. For those who do not mind the bigger pinches, if the acupuncturist uses larger needles and physically rotate them after insertion, it can potentially give you more benefits.
Piksie - Now that you mentioned it, I think Gabapentin is the reason I started getting this mild headache. Thankfully I haven't had any other SEs from it.
And finally, here's a video of a chinchilla taking a dust bath. Apparently their fur is so dense that they cannot afford to get themselves wet, so they clean themselves by rolling around in dust.
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sunocean - How many more rounds of TC do you have? The 7 shots of neupogen sound much harder than the one of neulasta. I've used Cerave cream- I like it.
piksie - Did you master the false eyelashes? Mine are intact so far, but I've avoided mascara because I'm afraid that will just encourage them to fall out. I susect they will anyway.
asaka - I just finished four rounds of TC. It's not fun but very doable. I felt lousy at times, but no truly dreadful side effects. I hope it goes well for you, too!
Cute video, Brink!
Hope everyone here had a good Thanksgiving! My brother, sister and brother-in-law all made the trip to my house (fortunately, no one expected me to travel this year) and joined my husband and younger son and me for a couple of days. My taste buds came back on-line just in time to enjoy the meal. And at dinner my brother-in-law said they were thankful for me - then my son said, "And I'm thankful you're not dead." Which I appreciated, but it was also a little sobering to hear.
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wanderweg: I have two more infusions. I get them every 3 weeks. Then after that I will need one year of herceptin.
Yup I wish I had nuelesta. Kaiser my insurance doesn't cover it so I'm stuck with neuprogen.
I am happy you were able to taste the food. I am so tired of my mouth feeling so gross. I miss food. I love to eat. The one thing I miss the most is sushi. And water just tastes horrible.
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On taste buds, I remember finding frozen yogurt taste like chemicals in the beginning. But despite the accumulative effects of Taxol, it tasted just fine the other night. I had assumed weekly Taxol SEs would just get worse and worse but that hasn’t been been true for me at all. Except for neuropathy, which did get worse (slightly) week after week.
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Sunocean - I have missed sushi so much! We are going for sushi Wednesday - I'll be 27 days out (close enough to a month!) and it's the night before my surgery.
Brink - the tastebud issue got worse for me with each round of TC. The worst part was the several days when everything tasted absolutely foul, but even after that it just tasted "off" for a couple of weeks. Weirdly, I found sweets especially off-putting.
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oh sushi! I miss it so! 😫
I hope everyone in the US had a lovely thanksgiving. We are still enjoying leftovers!
4th taxol this morning. Weekly infusions add up quickly-time feels much faster. So far minimal SEs. My mouth is a bit gross, my sleep is fragmented and my legs are a bit achey. Nails feel sensitive and my brows and lashes are becoming increasingly sparse. I too have no idea how to effectively apply fake lashes. I bought some supplies but even the “natural” lashes are ridiculously long. Bummer that we are going through this in the era of the big brow-why couldn’t it be the late 90’s when everyone tweezed the hell out of their brows!?! 😝😂
I’ve been kind of fixated on planning a trip somewhere warm between chemo and rads. Need to pin the docs down on what will be a safe travel window. Just need something to focus on.
I hope you all are doing well. With 12/20 weeks behind me I am starting to feel more positive. Sharing that positivity with anyone who needs it.
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Hi!
Wanderweg: congrats with being done with chemo! And it looks like a number of others are getting close!
I ate 3 raw oysters over a week ago, as of Wednesday I'll be 4 weeks PFC. I decided F it. And man were they good! I have continued to abstain from honey and unpasteurized juice and cheese but I guess I can start eating those things again too. Water still doesn't taste great, so I'm been loading up on herbal tea. Seltzer is ok when I'm really thirsty.
So, I went for my radiation mapping on 11/12 and got a call last week that they don't like it and I'm going back tomorrow to redo it all. I guess my plan has changed, though they are still on target for 12/3 assuming tomorrow works. I'm annoyed but want them to get it right. It looks like I get 4 more tattoos.
I also met with a naturopath, doctor of natural medicine. She advised me to take theanine and sage tea for the hotflashes since evening primrose (which I thought was safe), black cohash, CBD, and a number of other things are off the table. Also, no hemp, soy, or flax. It happens into something fine but I should not be going out of my way or taking any as supplements since I'm so highly estrogen positive (95%). I had no clue what caused progesterone - google is not very helpful there. It was very, very helpful to talk to someone and most of it was right in line with the hospital, just more in depth. I'm going to do some actual testing in February but there is no point now being so close to chemo.
The hospital is saying no biotin and collagen during radiation, but I want to confirm that tomorrow. has anyone else heard that? It makes me sad re my hair, which is growing.....though the naturopath said that the biotin probably isn't helping.
My legs are still stiff, sore, painful, tired....wondering when that will go away from the Taxotere.
Again, hang in there all! Hope the holidays are doing more cheering than jeering.
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KK2018 and others - I’ve eaten sushi several times during my weekly Taxols. I’ve asked my MO multiple times about it and the answer was it’s fine. Did your WBC count recover after AC? Taste-wise sushi was just slightly bleh when my taste buds were down.
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KK - I want to go somewhere warm, too. If the weather holds and I’m healed enough after this Thirsdays’s surgery, we’re heading to the SC coast Friday after next. Even two days by the ocean will do me good.
Tigerlily - It’s so great to see people crossing or approaching the chemo finish line! It makes me feel like we are all in this together. I am starting Tamoxifen December 1st, so I will try sage tea for the hot flashes. And yeah - when does the muscle pain/heaviness from the Taxotere end?
Brink - You know, my MO never said anything about food restrictions, but I’d read to avoid sushi so I did. Maybe it wasn’t necessary. But I sure plan to enjoy it when we go out o Wednesday
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Among other things, we toasted my finishing chemo at Thanksgiving
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wanderweg what a beautiful picture! Yay for finishing chemo. I cant wait til be done with it!!
Regarding sushi I was told because we have low immune systems due to chemo we are more susceptible to infection and since its not cooked my doctor told me not to risk it. He also told no honey. I miss it so much. Looking forward to being able to have some in mid January!!! Wanderweg enjoy your sushi on Wednesday!
I think planning a vacation is a great idea and I have been thinking about it as well. I think we may go to a really nice bed and breakfast getaway in Joshua Tree. We went about 2 years ago and such peace and tranquility. Vacations will give us the motivation we need to see the light at the end of the tunnel !!
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Hi ladies.
Aw wanderweg! You look so happy!
Tigerlily, sorry your mapping didn't go as planned. It's just one more trip to most people, but it's ONE MORE TRIP! Ugh!
Wanderweg, KK2018, I haven't made an effort to find eyelashes yet. I really need to, though. I'm starting to look sickly, and I can see it in the eyes of people I come across. It only adds to the "poor me" factor, which I've been handling pretty well until recently. All I've shown to the outside world is the crazy Spartan girl who won't be stopped. That girl gets out less and less. I can't hide behind it anymore. I think I'm going to a MAC counter or Sephora to talk with someone who knows eyelashes, because I sure don't!
As for sushi, I have stayed away during the first week after transfusion to be safe, but my WBC count has been high, so I have eaten as I've wanted to for the second week. Sushi has become my go-to meal the night before infusion.
Taxol is kicking my booty right now. The first night after Dose #2, my face itched so much that I rubbed off half my remaining brows. It was finally resolved by rubbing Benadryl all over my face and had no other symptoms of reaction. Days 3-6 are very painful. They call it joint and muscle pain, but it seems to be everywhere. Saturday night, I lay in bed wondering when my left ovary would explode. I've had chest pains that made me worry about a heart attack, but then I had the same pain on the opposite side, so stopped worrying about dying immediately. I get stabbing pains in just about every organ I have. The underside of my ribs, my uterus, knees, hips, back. You name it. The only part of me unaffected so far is my arms. Who knew… I stayed away from Percocet on Saturday to spend time with my brother and sis-in-law who were visiting, but the pain got away from me. It took about half a day for Percocet to kick in. That was NO good! So now I'm looking at either continuing the current course and suck up the pain (preferred as I don't want to give up), or modifying (reducing the dose for my remaining two double doses, moving to weekly, or quitting). My biggest concern after much research is long-term SEs. I can't live like this! Luckily, I don't have any signs of neuropathy yet, but if one is to believe the internet (…) the two go hand in hand.
Anyway, Oh My God, Sheri! Get off the pity train! I had a lovely Thanksgiving with family and friends, and it was nice to get a visit from bro and sis-in-law. My kids are happy and well-adjusted. I think the goal of productive citizen will be reached, at least with the oldest. Jury's still out on the little one.
I'm skipping most holiday gatherings as they fall on my bad weekend, but I know they love me anyway. They're all waiting patiently for me to get back to myself, and I feel so fortunate for them all. And for you all, the only ones who have any idea what I'm talking about…everTo all of you who are planning vacations, enjoy! If you make it to San Diego, look me up. To those who have finished chemo, Yaay!!!
Moving on to rads, I'll see you there in January. Save me a seat.
Xoxo
Sheri
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piksie- sorry the DD Taxol is brutal. Was supposed to be on DD Taxol but did so bad on DD AC they said no way to DD and I HAD to have weekly. For me, with weekly Taxol I can exercise and not feel the body aches or bone pain. So much easier on me but the road is long with weekly. But you have already chopped those down considerably with the DD Taxol. Don’t quit, try a weekly Taxol. I just had #8 yesterday. So doable without gutting your life.
Jess
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hi everyone! I’m dropping in from the October group. Had a quick question for those on the ACt regiment. I just completed AC (🙌🏻). I understand my eyebrows will be departing the station soon. (Train analogy - why not. lol). When did everyone lose their brows (if at all)? I’m thinking of getting the prosthetic ones that I hear about and wanted to be prepared.
Thanks
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piksie I'm sorry to hear what you are going thru. I too am having a hard time with TCHp. I feel like crap for 2 weeks. I read other people are even running during chemo and I cant comprehend !! Lol.
Sending hugs to you.
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Piksie - Sorry to hear about your hard time. Switching to weekly should make it easier for you... Another option is for you to switch to Abraxane, which causes less allergic reactions in general. It does cost more I believe than standard Taxol but has the same efficacy.
Sadlynew2018 - I still have half my brows after finishing 12 weeks of Taxol. The general shape is still there so I just fill them in when I put on makeup.
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sunocean I’m having a hard time with TCHP too, I’m on day 12 and still feeling bad seems to last almost until the 3rd week
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