Starting chemo February 2018
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- Sorry to hear about all the SE’s everyone are having. We gotta hang in there sisters.
- I had my second treatment yesterday which was only taxol instead of THP. That darn Benadryl and the steroid are a horror. Fell asleep in the chair there and then that was it, didn’t sleep at all last night nor today and craving sweets like crazy. And I hate sweets.
- Have a UTI. And I did not listen and ate sushi and have had the big D since last week and it’s E. coli .
- Funny they called to tell me as again I was about to eat my sushi lunch. Did I throw it away or eat it anyway ? I ate it anyway. Idk felt good to be defiant. Just hurting myself anyway. Silly thinking I know.
- Jo yes disconnected I know the feeling. A friend came to see me and I could t remember her name .
- All day I tried to remember thinking how can I forget. Never came to me until I finally gave up and looked at my old text messages. Scary it was.
- So far no SE for me except a little bone pain and a little nose bleed and eyes watering like crazy. Usually well last week the pain and terrible fatigue didn’t hit me till Saturday and Sunday .
- 2 down and 10 to go and then surgery and then another 9 months of chemo and then maybe rads.
- The journey is too long
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I had Taxol 1 yesterday afternoon. No problems at all. The benadryl made me groggy so I was dozing/sleeping in the chair & then after I got home, I went to bed for a 2h nap, got up for a late dinner, took a walk with the dogs & went back to bed. Slept ok at night - sleeping is still my one super power, yay!
I feel totally fine this morning.
I just have to remember to bring my blankets & toque from home next time as it was cold in the infusion room, even with the heated sheets they brought me.
Hope everyone is doing well & looking forward to a nice weekend.idkidk - step away from the sushi!!!!! Hope you feel better soon.
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Day 4 post chemo is kicking my butt my neck is still full of fluids so uncomfortable I'm supposed to go see my PS today hoping I can get the strength up to go. Hope all you are doing okay this is been a long tough road girls
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Moth that is great that your infusion was eventful.
Debs hope your strength will be there for your appointment and sorry to here that your fluid issue is unresolved. In the taxol thread i think that people were talking about a product for fluid retention. I don't remember the name unfortunately but i hope that the drs have prescribed something to relieve you.
No taxol for me today. My BP was 85/55 amd still temperature in the 100. MO said to take tylenol and call back if the temperature is not decreasing. I have mix feeling about this. In one hand I am glad for the pause hoping that my mouth sore could heal but in the other hand I am missing a treatment just when I started it.
Have a great weekend everyone
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- moth yes I learned my lesson oh yes I did.
- Ladies the strangest thing is happening to me. I haven’t slept not even for 5 minutes since that 40 min nap during taxol Wednesday afternoon and it’s now Friday .
- I’m wide awake can’t sleep at all. WTH did they do to me ? My heart rate is slow I can feel it and having difficulty breathing and I’m shaky. But wide awake and seems like I’ll never sleep yet I’m so fatigued.
- Maybe I’ll try watching Netflix. If I don’t sleep again today I’ll have to call the doctor. Weird
- My dogs look so tired poor things lol
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idkidk- sometimes the steroids will mess with your sleep pattern for several days. You must be climbing a wall now without any sleep.
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Indahood thanks so much for updates they let the rest of focus on the light at the end of the tunnel.
Deb I hope they figure out a way to make you more comfortable due to the fluid retention. You are such a brave warrior and have been through so much.
Moth I hope you are well enough for them to do your infusions so you can finish your journey. Have you decided to ice your hands and feet? After taxol number three today I have had no issues with neuropathy and even my nails are fine no discoloration or nail pain. Even the chemo nurses are surprised about my nails.The only additional thing I have done is rub some bag balm into the nail bed and cuticle area once a day.
Lolotte how is your mouth sore? Hoping it is on the mend.
WorriedMe so nice to hear from you although I was sorry that you have had a rough time hopefully it will get better.
I had an interesting week of sorts. Taking a shower Sunday I became horribly short of breath and passed out. So trip to the ER by ambulance. CT scan to make sure that I did not have a blood clot once that was ruled out echo of my heart. Nothing to worry about was found on the echo so I was released from the hospital but they did decide to reduce my chemo by 15 percent. Monday night I began retaining fluids in my feet and ankles a lot of fluids so call my MO and am told go back to hospital. They are run a doppler venous test to make sure I do not have blood cots in my legs. Came out fine no clots. So I am on lasix for the fluids. I am actually feeling much better with the fluids leaving my body shortness of breath improving and not as tired as well. But they are reducing taxol 25 percent. Had taxol number three today at the reduced amount was watched like a hawk so far feel fine but have a pass for lack of a better way to explain it so if I begin to feel anything unusual I go directly to the cancer floor of the hospital and skip the er since it is the weekend.
Did get one terrific positive the ct scan showed all my tumors and the two larger ones in my right breast the largest has shrunk almost 2/3rds the next largest is almost gone smaller than the size of a small pea. The three small ones in my left breast are gone!! The chemo may be hell but this news makes it worth it to me.
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Hello my pink sisters I hope everyone is doing as well as can be on this Saturday morning... Had round 5 yesterday and so far my steroids still have me on a upward feeling I know that won’t last too much longer tho....
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Hi everyone, I'm almost 48 hours past Taxol 1 and feeling very good so far. No problems or SE's at all. No issues sleeping, no pains or aches yet.
I didn't ice. My current plan is to not ice unless I start getting neuropathy symptoms. Nobody does it here for weekly taxol, only for taxotere and they keep saying it's only for nail damage not for neuropathy. At this point I have enough on my plate that I don't want to be the one to bring in the studies and show them otherwise. I'll just do my own thing when I feel like it.
AMBurt - congrats on the CT scan!!! What awesome news! I love hearing from people having neoadjuvant chemo because you guys can actually see that it works!
WorriedMe - hope the steroid crash doesn't hit you too hard; enjoy the good feels while they last!0 -
Hello ladies,
I am glad to hear that some of you had some rest from SE this Saturday and that chemo is working for a lot of us. How frustrating would it be to suffer for nothing!
I am writing today because I am very frustrated. My temp did not fall down with tylenol and MO on call sent me to the ER. I am now hospitalized with a 24h IV antibiotics. What I am frustrated about is the 3 degrees difference there is between the thermometer I received at the cancer center and the stupid thermometer at the hospital. I am a grown-up and I know when I have fever. Chills and hot passages are a tell talefor me and the f..cking thermometer at the hospital says 98 something no fever. I hate that. When i don't have fever, the thermometer from the cancer center indicate 97 something. Should I then believe that I have actually 94? Stupid. I am really angry!
Debs I hope that the fluid in your neck has disappeared by now.
Hands in hands we can beat the monster inside us
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Hello my February Sister Warriors! I haven't posted in awhile but have been reading all of your updates!
Had my first Taxol (paclitaxel) on Tuesday. That benadryl knock-out was crazy! Started having some aches on Thursday evening...took a tylenol for it. Ended up taking two tylenol yesterday and none today. I feel pretty good...just a little tired. So far this has been easier than the AC. The AC (or the steroids?) messed with my head for a few days each cycle (depressed). The Taxol has not. It's weird that there's no meds to take at home for these taxol infusions but I'm glad. Still have to do the grastofil shots though.
I've been fighting a cold for what's going on 3 weeks now which sucks. It's finally subsiding over the last few days but reallllyyyy slowly...I can truly feel what it's like to be immuno compromised...my body just doesn't seem to have what it takes to kick what should be a week long cold. : (
So sorry to hear about some of the crazy struggles some of you are having...
Lolotte...courage, ma belle! At least they're taking care of you and watching that fever!
moth...no icing for me either...I haven't seen anyone do it at our cancer care and the nurses gave me blank looks when I asked. So far so good though...no tingling in hands or feet yet (knock on wood!)
Worriedme77...enjoy the steroid energy!
AMBurt...so scary you passing out in the shower! Glad you didn't hit your head or break anything! Thanks so much for sharing your happy news about the chemo working...you give us all such hope during these crazy chemo days!
Idkidk...I hope you're sleeping the whole weekend away to catch up on that well needed rest!
Debsmisto...hope the fluid retention is resolving itself this weekend...you poor thing!
Hugs to you all!!
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amburt- sorry you're going through such hell with your temperature. Congratulations though on the CT results. That is wonderful news. It's great that you can see that it's working. It's a big advantage over some of us who had surgery first then chemo. Your tumors have shrunk significantly. That's a very nice reward for all the hell you've been through.
Hope all the rest of you have great weekend and a week ahead with no SES.
I ran a 5K this morning and then went to work. it was ok. Im still feeling a disconnect with my brain , but this to shall pass. After work, I planted some new shrubs. As quickly as I plant the new flowers my dogs dig them up. It was fun squirting the dogs with the hose and chasing them down to retrieve my flowers. At least it felt normal and made me laugh. Now it's time to bathe the dogs. We are all exhausted.
Moth- glad you're tolerating the taxol. Hope you're enjoying the new pup.
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indahood - did you start the rads? how is it going?
worriedMe - how are you feeling? So sorry you had to be hospilalized and had the SE's. Stay strong and thinking of you! As indahood says and i agree with - this too shall pass!
lolette - have they managed to control the fever? Sorry you had to go to the hospital. How are you feeling now?
CBOK - how are your nails? I do see some discoloration on mine but thankfully haven't lost any.
Moth - about the icing for Taxol.. My MO said if she thought it would help, she'd have buckets in there for her clients. She did say the nails are mostly affected on Taxotere. For me, reducing the dose 15% made a big diff and nail pain has been minimal. I'm on dose dense Taxol every 2 weeks. So glad you're enjoying time with the pups! My pooch and I spent 2 hours in Central Park yesterday, day after Taxol #3 and had a wonderful time.
jo6359 - 5K, you are the best! And I was reading and laughing about the flowers planting and the pooch "helping".. sounds like a familiar situation! so glad you guys are having a fun time doing normal stuff.
I have one more Taxol left. Looking forward to being done. The bone pain from the Neulasta and the Taxol are all mixed up in my head and body - but between the Claritin, Advil and the RX for pain meds, hanging in there.
We can do this girls. Hope everyone is enjoying the weekend and the SE's are manageable. Thinking of you all!
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Butterflylily- I'm glad the weather has improved in NY. spending a couple of hours in Central Park with the pooch sounds fun. So what's on the horizon after your last taxol treatment?
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Hi Ladies,
I am actually part if the mar 2018 group, but, need a little advice from those a little ahead of me. I notice a lot of you are on Taxol. I start DD Taxol biweekly this week. I handled AC fairly well, with the exception of sore mouth, heart burn and inflammation and soreness in my "private parts" with my last AC cycle. What I am hoping to hear from you all is that Taxol is easier on the mucous membranes? If not, what is everyone doing to combat this. I do the mouth rising and have now started Epson salt baths. Is there any prescription that helps? Anything else I should be prepared for? I am nervous already and it's not for 4 days 🙄
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Hi beauties, reading all your posts and cheering you on. Scary to hear about hospitalizations and passing out. Glad to hear that everyone is ok despite these events. This week for me has been wonderful! It feels so great to just feel normal. I have mountain biked, hiked, dog walked and today I snowboarded. My energy seems to be consistent. Not back to what it was pre-diagnosis, but consistent in the way that I can make plans and do activities without having to spend a few days on the couch after. I enjoyed this week so much since I know that I am starting my Radiation tomorrow and not sure how this will affect me. Hope your SE's are better than minimal in these upcoming weeks.
indahood
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Butterfly, I am feeling exactly the same, and this is officially my first post. I bought ice gloves( look like boxing mittens and ice socks) they had gel in them and didn't last very cold during the infusion, however I use them at home often in hopes of preventing the peripheral neuropathy. The day after taxol I felt like I had insulation on my skin, or mosquito bites, then that night I was hit with the most intense pain I've had, like Charlie horses that escalated, and then left only to show up elsewhere, woke up to my lt jaw frozen, I called the nurses and they said try a warm bath. Seriously? My jaw ... Um. So I called the oncologist and I was put on decadron again but I swear my pain is so much better, so thankful. I hope so much that the second taxol is better. I hope things are getting better for you too.
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Thats so awesome- I can't wait to have that energy! I wish you the best with your radiation.
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Thats so awesome- I can't wait to gave that energy! I wish you the best with your radiation.
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Tlow, I was told that Taxol was so much easier than a/c. Each person reacts so differently. I looked forward to it. It was so different from the start. They take your pressure every few minutes and a nurse watches you carefully in case of reaction, and I was fine but it took double the time a/c did. I was up till 8 am the next day, I believe it was the decadron, but I was given that during a/c and slept normally 17 hours afterwards, all I did was sleep for days. Not so now. I had diarrhea, nausea, itching. Day two I had muscle cramping, it showed up in different areas for three days, ice and heat helped, stretching, water and more water, Alleve with Claritin works great for the neulasta, not so with the muscle pain for me. I called the oncologist and once he prescribed more Decadron it stopped within the hour. I've read about a lot of people that have the cramping mostly on the same side as the cancer. Just an interesting observation and could be wrong. I hope you don't have any side effects, many don't. In fact that's what I was told too. I hope so for you.
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indiahood- I'm so glad you had such a wonderful week. Mountain biking sounded fun. Snowboarding, I'm not so certain. It must have been beautiful. I'm a South Florida baby . I like to look at snow, walk in snow but when it comes to skiing and snowboarding no way. I'm a coward . Good luck with the rads. Keep us posted. I have two more rounds of tchp and then RADS. I believe my doctor said there's an 8-week interval between the last chemo treatment and the beginning of RADS. . I hope your first treatment goes well. Keep that energy level up. You're doing great.
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Tlow990...I'm on DD taxol too. I have to say it's been a lot easier for me than the AC (I had my first infusion last Tuesday). I did have some pains start up on day 3...worsen a bit on day 4 and then tolerable on day 5. I took extra strength Tylenol on days 3 and 4. I have had no nausea or mouth sores...just a cold that I can't seem to fully shake.
Indahood...you lucky girl! You are our beacon of light. So glad to hear how quickly we can bounce back once chemo is done! Is your hair growing back?
Have an awesome week everyone!
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Tlow - I just started weekly Taxol x 12 last Thurs. No mouth sores yet (& I had them quite badly on AC) , just a bit of metallic taste. Bone pain started yesterday (day 4) but all I've taken is otc pain relievers & an epsom bath and it wasn't bad enough to keep me awake last night.
Mostly I'm feeling fine, enjoying playing with the dogs and doing some training with the silly youngster.
Both my college kids are taking courses in the summer term so they're back in school mode this week.
I'm considering tackling a closet today. I feel like throwing stuff out :P0 -
Hello everyone,
I am still at the hospital. They gave me a lot of antibiotics but my fever is not coming down. They did some blood culture but it came back negative. They want to do another one today but I really feel that it is unnecessary. I am fed up of being at the hospital. Ct scan of my chest showed bilateral pneumonia but I think it is viral. Drs keep saying that fever is indication of infection but antibiotics arw not working. I am desperate. I want to go home and see my kids. My hospital room is somber and depressing.
Wish everyone a good day!
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lolotte19- I’m so sorry that you are still in the hospital. Pneumonia is a nasty beast. I hope you improve quickly and get home soon, where you will be more comfortable. Why does chemo have to be so rough?!
I’m sending healing thoughts your way
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hugs Lolotte! Hang in there. I know what it's like since as you guys will remember, I got stuck in hospital for 5 days twice with febrile neutropenia. I missed my family & my dogs so much!
As frustrating as it is, when the fever is not budging, the hospital is the place to stay. Things can get worse very quickly and you want to be where they can treat you quickly. My blood cultures also came back negative each time but I also had clear chest xrays. My fever took a couple days to come down the first time & they never found the infection either. Mine is just listed as 'fever of unknown origin' both times and my internal medicine specialist said that's common in about 50% of chemotherapy febrile neutropenia cases.
With pneumonia they need to consider if it's a resistant strain & whether to change antibiotics, or whether it's fungal and add anti fungals to your meds. The protocols for febrile neutropenia ramp up quickly for a good reason. I don't want to scare you but this is serious stuff. Even if your pneumonia is viral, you still need antibiotics to prevent a secondary bacterial infection from setting in.As frustrating as it is, try to relax and focus on letting them help you. Are you able to watch tv? Are you eating ok?
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So sorry Lolotte about being stuck in hospital. I also had fever last night to accompany my 3 week long cold. Headed to Urgent Care this morning and turns out I have pneumonia too (Dr could hear crackling in my lungs and x-ray confirmed it). Since my fever settled before heading out I could be sent home with antibiotics (fever went up to 38.2 last night).
Hoping antibiotics kick this pneumonia's but for the both of us!
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Oh no lolette, so sorry you are stuck in the hospital try to relax and let the antibiotics work, hoping you're home soon. Mom of two too, darn pneumonia, this chemo makes us so venerable to every thing ugh. I feel silly complaining compared to you girls but I had to call off sick from work today my stomach is just such a wreck the Big D's got a hold of me I'm weak just feel awful so sick of being sick girls. I try to keep a positive attitude but it sure is hard sometimes. And my surgery decisions are weighing heavy on me just not sure what to do here but I'll sort it out. Hope the rest of your doing okay
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I'm sorry you're in the hospital Lolotte, I am sending you prayers for a really quick recovery. Mom of two, and Debsmisto, please feel better, I'm learning so much from everyone here. So glad we aren't alone. Debsmisto, I hope I'm not out of line by asking about your decisions for surgery. I meet my surgeon in two days, I wish I could have had surgery prior to chemo. Keep your spirits up!
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Hello all
Thank you very much for your get well wishes.
I feel much better today. I have also regain some of my strength and can stand up for more than 30 seconds without fainting. My mouth sore is slowly healing thanks to nystatin and is just a little sore. I can eat bigger bite but appetite is still not what it was before chemo, which is good for my future diet after chemo. No fever this morning. Let's hope it continues all day long so I can go home tomorrow. Mom of two, i feel your pain. Be careful with fever. If you cannot have it under control after 24hrs I would recommend that you call your MO for further instruction. And yes may the antibiotics kick pneumonia 's but!
Debs, so sorry to hear big D came back with a vengeance. You are definitely in my thoughts.
I am also having second thought about the surgery. At the start, I was told mastectomy then after some AC treatments, the tumor shrunk and new surgeon said lumpectomy. I was so happy. But now, seeing everything we have to go through to get treated, i am afraid of recurrence and think about double mastectomy with reconstruction later after radiation. The cons is the lost of sensation on both breast compare to keep one breast plus longer healing time and multiple surgeries involved. I don't know what to do. For sure I don't want to go through chemo again!
What do/did drive your decision?
We can do this, we are strong ladies. Take care everyone.
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