Weekly Taxol group
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I've been lurking since my diagnosis. You guys are great! I'm glad someone else mentioned this. I didn't have numbness but the tip of my tongue felt like it had pop rocks on it! Kinda like I had a sparkly tongue! I guess I should mention it this week. That was my first infusion. How is the hair situation for those of us on weekly Taxol/Herceptin? Doctor told me I might get some thinning but more than that was unlikely. Trying to decide whether to cut my hair short or take my chances.
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I am doing weekly Taxol and every third week Taxol/Herceptin and Perfecta. Yesterday was my first Taxol only infusion. I tried chewing on ice chips for about 30 minutes before they started the Taxol, through the hour long infusion, and 30 minutes afterward.
The ice worked! I don't have the chalky mouth and sensitive tongue like I did last week, and my taste buds are not affected nearly as much. It is nice not to have this SE this week!
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To kymberly, I had super thick shoulder-length red hair which started falling out week 4 so I got it cut short, thinking that would make a difference. By week 5 I was shedding like a cat and though I still had plenty left, I couldn't stand the amount of hair all over everything. It was falling out in my bed, in the shower, all over the sink, and all over my desk at work. I got it buzzed week 6 and am now wearing my lovely wig. I still have a covering of fuzz because the girl who performed the buzz said my scalp looked irritated so she didn't want to cut too close. I am on week 7/8(?) (they skipped 7 because of numbness) and am still shedding little short hairs and have developed a few bald spots. Based on what others in the chemo bay who are getting the same weekly taxol/herceptin treatment, I will probably lose almost all of it before I'm done.
The first haircut was pretty traumatic because I've never had hair that short. What I've learned from the experience is that I actually like my hair short, which is good since it will take a very long time for it to grow back to the way it was when all of this chemo is over. Another good thing is that it sure reduces the amount of time I spend getting ready in the morning.
Making lemonade!
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kymberly Maybe you'll get lucky! The dr. told me my hair would thin, the nurse told me to go ahead & cut my hair. My hair started coming out after the 3rd treatment. I ended up cutting it myself, the hassle of cleaning the floor, shower, bed was too much. It went pretty fast, I only have a few patchy spots. Be sure to mention the tongue tingling.
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I had my third treatment yesterday. During treatment and for the rest of the day, I felt very lightheaded and shaky. A result of Benadryl and steroids I am sure. Today I am fine, just a bit shaky. I still have swollen glands under my jaw. The chemo nurse said to call and let the MO know Monday. Also my white blood cells count was a bit lower than last week. The nurse said to not go around people who were sick. That is really the reason I am not working. There is always someone sick among the K kids.
Today I went running errands. I was only out of the car 4 or 5 times. I had a hat with a brim and make-up on my face with 15 sunscreen. My face is all sunburned. I usually do not burn that easily. I will have to be more careful.
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I could not figure out how to include the message with the picture. This is my 3rd treatment .The picture is so dark because of the window behind me. Even with the shade down the sun still filtered through
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Praline, glad your treatments are going as well as they are. white blood cells go go go!! Hope they hold up. Chemo sure does a number on your body! That's a great pic, you look lovely. I bet those kids are missing you.
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Praline, that's a nice photo. One thing: I was always advised to use the highest possible sunscreen, i.e. SPF 50 or over. The treatment can do a number on your skin.
I reacted very badly to Benadryl, which made me both sleepy and high. NOT a good combination! At some point, I spoke up, and they were able to use hydroxyzine instead. I found that much easier to tolerate.
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Nice pic, Praline, and a pretty view of the river too!
The benedryl drip made me act drunk and literally, I could NOT keep my eyes open. I will discuss with MO this week to see if she can dial the Bendryl back a bit for this weeks infusion.
Also, has anyone experienced bladder pain with Taxol? I am HIGHLY susceptible to UTI/bladder infections, and am hoping this won't be a weekly SE. I took my alkaline powder (like baking soda) and my Gogi berry juice supplement and it helped the pain this morning, but am very concerned.
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Hi all,
Im 7 days PFC and last night I noticed one of my ankles is swollen. Now that I think about it, I think I'm having water retention issues other places in my body.
So now Im having neuropathy in my feet and legs, and also swelling. I saw RO for the first time today. While I just wanted to complain about my chemo side effects, he was more focused on radiation ( imagine that). He did say that everything Im going through is part of the process, so I guess I just have to put my big girl panties on and plow forward..... I start work on Wednesday, just pt. Im scared that I'll fall on my face or something from leg weakness.
Send me good viiibes!!
Jodi
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sending good vibes to you Jodes! And congratulations on being done with Taxol!! Hoping your SEs disappear soon
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Nolagirl I believe I was asked if I had any burning or pain after 1st treatment, no issues with it though. You may have to ask for something. Hope you get some relief.
jodes congrats on being done with chemo. Hope your swelling and neuropathy problems resolve quickly. How many rads are you doing? Good vibes coming your way!
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Hello all
Missed commenting for a bit; I have been busy with treatment, managing side effects and trying to work a bit.
Happy to see that some have finished treatment; can't wait to "ring the bell" on my last day in 6 weeks!
I see some of you are dealing with the neuropathy and water retention. That is me too; although my biggest complaints right now are the muscle pain, nose bleeds and hemorrhoids. Annoying. The MO said my platelet count is low so the bleeding from the latter 2 is very very annoying! I have tried everything they suggested for the nose and nothing is helping but i was getting about 6 a day and now its 2 or 3 so I guess its better. The hemorrhoids were terrible until i found a tip online that is different than anything else i found. they suggested the over the counter 1% cortisone cream and that has helped a ton; along with my nightly cocktail of laxatives, stool softeners and miralax.
I tried the tylenol for the muslce pain but it didn't touch it so I am just toughening it out on that end.I had a nice treat on Sunday; my daughters wrote essays and nominated me for a day on the "pink carpet" which was a morning of beauty and gowns put on by a breast cancer awareness group called "Fighting Fabulously" to let breast cancer patients or survivors feel pampered for a morning. they only picked 5 women (2 survivors and 3 treating) to attend and they picked my girls essays so I got to go! The media was there and it was a real treat! I ended up on the front page of the paper ( I think because i was the only one of the women without hair - LOL). I have struggled with body image issues lately so this was just what the doctor ordered. Between the loss of hair, eyebrows, eye lashes and the weight gain (30 pounds
) its been rough as you all know too. I have noticed meeting other gals treating and on this site there seem to be differences in the way our treatment happens; they seem like slight differences but it must just be the docs are a bit different based on location. When I go for chemo weekly i first see the lab, then i go to the medical assistant, then i see the MO, then once all is reviewed and cleared and we go over the SE, i am then sent over to the chemo suite. its a good set up because i always get to chat with the MO before treatment starts. Some of you are getting IV benadryl before taxol, I am given oral benadryl, oral pepcid, then IV steroids and then after a rest period they start the taxol at 1/2 the rate for 15 min then they increase the rate for the remainder.
Suggestions from my MO for the neuropathy - 100 mg vitamin B6 every night
I was referred to physical therapy to see a specialized lymphadema therapist for the fluid retention on my operative side. it seems to be helping a bit.
I haven't had numbness of my tongue. Just fingers and toes.
The benadryl seems to make me feel off the rest of chemo day and then the steroid really kicks in and i am up until at least 3 am; I used to fight it....trying to sleep but now i just have a netflix marathon.
I have Taxol # 7 tomorrow. I wish you all well and good thoughts for your weeks. Take care
Sawyer
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Thanks Ladyhumps...I will mention to MO.
Sawyer- Your "pink carpet" day sounded fabulous! Congrats to you! ....and good news on having only 6 Taxols left!
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RO says, mon - fri for 6 weeks, I'll start March 14, first day of spring break. Appt tomorrow for mapping.
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Here is a picture of my daughter and I with the Governor of NH at the Fighting Fabulous event I got to attend on Sunday.
Sawyer
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Sawyer- that's a beautiful pic 💕
Jodes - hoping the worst is behind you and that6 weeks of radiation will fly by!
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Sawyer- Beautiful picture!
Jodes- I hope things improve. I had swollen this weekend but it seems to be fine today.
Nolagirl - I had a UTI this past December just before starting this bc mess. PCP suggested taking CYSTEX Cranberry. It seems to help. I forgot to mention it to my MO.
This past Saturday I felt fine , tons of energy. Sunday morning I was so tired! I had to drag myself to church. I felt tired all day. Yesterday I was better and today I feel pretty good.
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I'm 15 days PFC Taxol. I noticed mild neuropathy on my right thumb and index after 11th Taxol. And it spreads to all 5 fingers til now. Of course, my oncologist said it should go away. And I have noticed that my lashes started to disappear after 12th Taxol....ugh....not gonna complain...by the way, starting Tamoxifen tonight 😁
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Tesla, did you ice your hands
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No. I didn't ice my hands. I thought I probably won't have neuropathy at all if I already made it 11th taxol and no symptoms. ugh......guess I underestimated it. So far, my taxol journey gave me more dermatology issues than hers
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Tesla, I didn't notice any neuropathy until my 10th infusion. Even then it was so slight. I have my last taxol tomorrow and I am worried about how much worse it will get. My mo seems to think it won't get much worse, but from everything I have read, other people's experience suggests it may. Ugh.
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Homeschool4us I have my last Taxol on Friday and have noticed some (what I think) is mild neuropathy in my right foot after #10. My oncologist said we'd make a game day decision on finishing with #12. I'm inclined to finish but it didn't occur to me that neuropathy can get worse even after finishing Taxol until now.
Ugh indeed!
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No treatment today due to lingering neuropathy so I'm still stuck at #6. Will see the dr next week to discuss another reduction or switching to something else. I've had plantar fasciitis in both feet and I definitely don't want any nerve issue in my feet. I don't think I could stand icing. My hands ache if I have them in cold water for a few seconds.
I switched back to a regular toothpaste instead of Biotin, it seemed to help with the slimy feeling and some of the taste issues I was having. Still using the water, baking soda, & salt mixture for rinsing.
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Marg52, to say I am so thankful to hear your story about the swelling doesn't sound nice, but I have gained 30 pounds in two months and have 6 weeks to go. I am going to have to go get me a caftan! Are you old enough to remember those?! (rhetorical question)
The swelling is affecting my breathing while I sleep. I wake up first then think what is that noise? I had taken an unexpected nap yesterday when it finally dawned on my that noise was my trying to breathe (snoring). I talked to my partner when he came home from work last night, his reply, "I know, I have been wearing earplugs for weeks! Don't worry, I'll wake you up if you totally stop breathing!" He really is a good care giver and knows I love to laugh.
The biggest problem I have is that my Onco keeps saying,"That is not a side effect of Taxol." Apparently the only side effect that I am allowed to have is neuropathy. Her and I are going to have a little conversation Thursday, my next treatment day. This whole trip feels like an allergic reaction to me, everything about it. That's just my thought. I can treat the pain, but this swelling is beginning to scare me. I just hope it goes away. I am supposed to have radiation after this but have not met with my radiation oncologist yet.
Please keep me posted.
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LMMax I remember caftans ha ha. And you make an excellent point about oncologists being obsessed with neuropathy and Taxol and not taking other issues seriously. Certainly was the case with mine and my blood clots! Give your MO the business tomorrow. Should she look at your heart function?
I hope you feel better soon.
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LMMax - I have gained 30 pounds
from the steroids and I too am now officially a snorer! When this is all over I think my new hobby with all my free time will be the gym LOL. I have actually been sleeping on the comfy couch (my choice) because I get up like 8 times a night with dry mouth, which makes me drink and then i get up to use the bathroom. I am hot all the time at night; at 47 at diagnosis chemo put me into menapause so there is that to also blame for the not sleeping well. Lady humps I am sorry you are stuck at #6; hopefully you can move on soon and put this behind you. My fngers and toes tingle but very slight so we have not stopped. I mostly notice it at night when i am not distracted by anything else.
I found my MO to be all "TAXOL has very little side effects" but now when i see her and tell her what i am experiencing she is like "that is normal" ??? I sometime think they just wait and see what we feel.
Sawyer
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LOL at caftans, I definitely remember those! I have #3 tomorrow, got my port in yesterday. Still a little sore today but it's manageable. So far so good, just some fatigues and my counts are ok.
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I've only had one Taxol/Herceptin treatment and I woke up with the worst leg and foot pain on day 3 after treatment. It kept me up for 2 nights. I am Diabetic and have plantar Fascitis in the left foot already. Sharp stabbing pain in my joints and feet with some burning on the tops of my toes. Shooting pains all over my legs with that awful aching from my hips down. It seems to have subsided at this point (Day 5). I noticed if I stay on my feet and don't sit too long it relieves the pain somewhat. It really worries me that I am having this after having only one treatment. I am having Taxol/Herceptin weekly. Anyone else have these issues this early on?
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