Weekly Taxol group
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Hello,
Did anyone's hair just thin on weekly taxol? I just had number 8 and I still have hair. If so I have questions. Posted on the hair thread, but no one answered. Thanks
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I Brain, my hair, lost earlier with AC, started growing back immediately and has continued to grow during Taxol. (#8 tomorrow, if I keep doing it). This doesn't seem to be particularly unusual.
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Hi Team,
I thought I would take the time to summarize my Taxol / Herceptin cycles for you all. I just finished cycle number 9 of 12 today! Three more to go and it can't come soon enough. This has been more mentally taxing as opposed to being physical. I don't want to wish the month of June away, but it can't get over soon enough. July 6th is my last day.
So, as you review, keep in mind my start day is a Thursday. I began on April 13 and will end July 6th (with a week skipped due to a funeral).
Here's the run down:
Cycles 1 – 3
Cocktail Recipe:
Pre Med: 4mg pill Decadron (steroid) Wednesday PM and Thursday PM
Day of: Tylenol (pill), Benadryl (IV). Anti-Nausea (IV), Decadron (IV), Herceptin, Taxol (full strength for my body weight)
Side Effects:
Benadryl: Drowsy after treatment, need a nap
Steroids: Super wired tired with a hangry Friday and Saturday. Little to no sleep Thursday, Friday, and Saturday. Bit more hungry. Crash on Sunday once steroid wear off and sleep.
Herceptin: None
Taxol: Neuropathy in thumbs and fingers (feel numb and thick), pre anticipated nausea, slight blood blown from nose, teeth tingling, slight constipation.
Cycles 4 – 9 and will continue to 12
Cocktail Recipe
Pre Med: None
Day Of: Tylenol (pill), Benadryl (IV). Anti-Nausea (IV), Decadron (IV), Herceptin, Taxol (20% reduction based body weight due to neuropathy)
Side Effects
Steroids: REDUCED wired tired with a hangry Friday and Saturday. Little sleep Thursday, Friday, and Saturday. Less of a crash on Sunday once steroid wear off and sleep.
Herceptin: None
Taxol: Hair loss only at this point. Neuropathy clearing up (fingers and thumbs almost at 100%), no nausea, no aches, no pains, appetite fine, no bathroom issues.
My Mondays, Tuesdays, and Wednesdays I feel fine. I've asked to drop the pre eds, but collectively, we don't think it's worth the chance of an allergic reaction and these drugs may be the reason why I am feeling well.
Hair Loss and Nails
Hair loss started at 4 week. I have thinned out significantly all over my body. My head hurt from the inflamed follicles and I couldn't sleep, so I had my head my shaved at week six. It looked awful away. The texture change, the gray was coming in, and I couldn't blow it dry so it looked like pretty bad. I still have hair but it has really thinned out. I don't think I'll have complete hair loss. I am wearing a human hair wig that looks my original hair. No one can tell, they just think I got my hair colored and straightened.
Interesting, I still shave my legs and armpits. That hair is still growing. My nails are still growing, too.
Weight
5 pound weight increase. I think it's the steroids. I'm not concerned about it. I'll get it off when I'm done with taxol in July.
Things I do to support myself:
Weekly acupuncture. I highly recommend it. It has greatly reduced anxiety and has helped with nausea, aches and pains. I skipped a session, so I know what I missed (not doing that again!).
Daily activity. I try to walk 10,000 – 15,000 steps a day weather and schedule permitted. I do daily exercises for a unilateral mastectomy and exchange surgery back in January and March (arm exercises, massage). Weight training and fitness classes when I can.
Supplements: 500 mcg B12 per day per General Practitioner orders. Biotin daily (not sure how much). Not a supplement, but I use an OPI nail strengthener every other day.
Food. Whole food diet to support the 12 cycles. 100 grams of protein a day. A diet support blood counts: spinach, broccoli, Brussel sprouts, turkey, salmon, almonds, apricots, yogurt, tomatoes. I have to say, I love eating this.
Things I gave up: Alcohol, fried foods, chocolate, junk. No caffeine, no sugar. Drink only water. Lots of water. Probably a gallon.
Work: Every day. Remote from the hospital during treatment, work from home Friday to avoid people.
Summary: Very doable. Just take care of yourself and communicate to your doctors any side effects so they can adjust your cycles. I felt awful last year due to a gall bladder issue (that has been resolved), I can now say that even going through chemo (of all things) I don't even come close to feeling as crummy as I did last year. Go figure.
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bmac16- I assume I will have my port or 1-2 years just in case as I understand those are the years most likely for recurrence. ... but I haven't asked MO
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bareclaws - Thanks. Glad to see you're back. Hope you are feeling better.
I'm trying to decide if it is going to slowly fall out or ? I've lost quite a bit, but still have a lot. I lose quite a bit when I brush it and more when I wash it. It is distressing!
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I brain,
I will be getting dose number 8 tomorrow and still have my hair, but it is very thin. I normally have very thick and tons of hair that I always wore long and at the advice of many I cut it to the style I have now. The first 5 doses of Taxol were at 60 mg and MO increased the dose to 80 mg. After the 2nd dose of 80 mg my hair dropped very heavily, to the point I thought I was going to have to shave the rest off, but it seems to have slowed down a little, so we will see what happens after tomorrows dose. I have heard that many women will have lots of thinning and nothing grows, which has been my experience, my hair has stopped growing. I have noticed my hair growth has stopped every else, including my legs and eyebrows, which I don't mind
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HelenFaith - that's sounds like my experience. Although I don't think my dose was ever changed. Onc said it would stay the same unless they had to reduce. Hair growth everywhere else has stopped, but it did seem to take a while before that happened. Thanks for the input.
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In the chair waiting for #3 Taxol, hoping anaphylactic shock doesn't happen this time
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Tonyaberryman- fingers crossed that all goes well with Taxol #3
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Seen my BCN today and wound from 2nd surgery still not healed despite having had 3 Pico vac dressings on. Have my 4th on now until Wednesday but she didn't sound too hopeful of there being much improvement. She mentioned speaking to a wound nurse specialist for advice. Was so disappointing and have been feeling pretty down all day. It's now been almost 4 weeks since my last Taxol. I am beginning to wonder if I will ever finish this journey. It feels never ending today 😞😞0
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I'm so sorry to hear that. Have drs given you any idea why healing is taking so long? I'm sure you are discouraged and stressed.
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Tonyaberryman, I am terrified for you and can't help but question why and how more treatments with the drugs that put you into anaphylactic shock could continue. I have a son who went into anaphylactic shock with antibiotics and it was terrifying and horrific to see. The doctors explained he could never have those strains again, because anaphylactic is very life threatening and the next time could kill a person. It is marked all over his medical records and he wears an id bracelet to alert medical providers in case of an emergency.
How are you?0 -
Thanks KB870 and Bareclaws. No reason given as to why it is taking so long to heal. Am very discouraged. When I started this journey I didn't expect any delays as I am otherwise a very healthy person. Never take painkillers or other Medicines and have always enjoyed walking. The last couple of weeks have really knocked my confidence and I am finding it very difficult to shake my low mood. Sorry for being so negative folks.0
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GlasgowGirl, NO need to apologize for anything! I/we feel your pain. (I was also one who was super healthy, I thought. A runner, no meds at all, vegetarian/vegan, and here I am, broken and genuinely exhausted from this long, drawn-out treatment.) Pleasecome here anytime and rant and rave and cry and question.
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Glasgowgirl, I'm sorry you are dealing with the delays. I was in the best shape of my life before this happened and am discouraged by the delays I've had in treatment and the nasty neuropathy that I'm dealing with. It is disheartening. Vent away, this is a safe, understanding place. I hope the wound specialist can shedlight on the situation and get everything back on track for you soon.
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Thanks friends! It's good to know there are people here who understand what we are all going through. My family (sisters/brothers) ask me all the time how I am feeling and I want to say "I feel like running away" "I feel drained" "I feel lost" but I always say "I feel ok - just need to get on with it" because that's what they want to hear. They are all so caught up in their own lives and if I do happen to mention things aren't going well they say "It's just a blip - you'll be back on track in no time". I don't blame them, that's just life. I hope tonight all of you are doing well and have someone close to turn to when you need to. 🙏💖💖😘
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glassgowgirl99- so sorry to read about the healing issues you are having to go thru. This whole stupid BC keeps trying to take parts of our lives. Hate it!
Will continue prayers for your healing and please know we are all pulling for you.
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Glasgow,
I know how you feel. People ask me all the time, how are you, I found it easier to just say "oh I'm fine, how are you" i think that some just don't know how to deal. Like we did when we were diagnosed.
Hugs to you. We are here for you
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Helenfaith- I'm doing just fine and everything went well with Taxol #3. I'm not that worried about it anymore, I just can't have any extra worry on me, I'm just believing that God is in control and he's gonna take care of me
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hey guys-- going to whine for a moment. Taxol 3 won this s weekend. I have been so sore (bone/joint pain) that I just want to go lie down and cry. Hard to act "fine" at my folks for Father's Day. Can't find a comfy place to sit. Can't find a helper with the pain. Hoping I wake up feeling better.
Oh, and new SE, too ( this is gross so sorry to share). Sinuses are drying out. I keep spraying with saline until I blow out fairly large dried up mucus patches so I can breath. Hate this.
Certainly hope everyone else had a better weekend.
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Dodgersgirl,
Sorry to hear about taxol pain. I barely survived the most recent one Taxol w help of vicodin for 2 full days and part tylenol for another 2 full days. I have been experimenting w diffrent stuff. Arnica gel is one of them. put generous amounts of the gel to cover both feet, ankles and knee caps. I oftern get up to go bathroom and from pain in the middle of the night. Put more of the gel at this time. Not perfect but helps me to sleep better despite bone pain. Other thinng I try is EMLA cream the same way I use Arnica. I also use aspercreme as a third cream remedy. Again I feel your cry.
If pain is too much, btw taxol pain also includes nerve pain from bone /muscle pain.instead of asking for pain killers ask your MO for muscle relaxers. Docs hands are tied re pain killers but not re muscle relaxers yet I heard.
It sure is a taxing road for all of us.
Mimi
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Mimi, thank you for all the suggestions! I have aspercreme on hand. Will try that right away
Again, thanks
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dodgersgirl Are you using the claritin? I start taking it day of infusion and next 4-5days. It does help.
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tonyaberryman, good to hear. Take care.
DodgersGirl, I know the pain you are talking about and it's no fun. I have found pool exercises help and seeing a physical therapist once a week. The PT I see does Myofascial release and it feels so good.
http://www.mayoclinic.org/diseases-conditions/myof...0 -
Bev, yes, I take Claritin every morning.
While on AC, a pleasant SE came from steroids-- all my arthritis pains were gone! Now with Taxol (still with steroid pre-meds) it's like all the arthritis spots are under attack and the nerves are firing and firing.
Today the pains are in my hips, knees, left elbow, and random headaches. Sigh.
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Oh Dodgersgirl are you doing better?!? I start down the same treatment path as you next Thursday. I'm so glad this community exists. I had absolutely no idea what I was in for. I obviously need to load up on many drug store items that no one told me about. I hope you are doing better ❤️. If and when you have a minute I would like to hear the worst things I should expect so as not to be alarmed.
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Wendeez414-
We want to welcome you to our community here at BCO! We hope you find the support you need as you begin treatment, you're not alone!
The Mods
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Weendeez414- thanks for the well wishes! The bone/joint pain is MUCH better today but still having sinus issues. Taxol 4 tomorrow
As far as worst side effects- I think we all get different reactions and they impact us differently, too. For me, I don't like being nauseous. Bone pain hurts for sure but I still don't like nauseousness
If you haven't already done so, read other the tips for chemo. There are great suggestions of what you may need.
Personally, I recommend taking the anti nausea meds as prescribed by your MO, especially with AC; taking Claritin with Neulasta; drinking lots of water the day of chemo; with AC eating every 2-3 hours to keep tummy settled; eating ice chips during Adriamcin; rinsing mouth with water, baking soda, salt after eating, making sure to eat protein; if queasiness becomes an issue, try saltines, ginger tea, ginger ale, and wearing Sea Bands.
With Taxol, other than right now, I haven't felt queasy. I still drink lots of water, ice hands and feet during Taxol, spray SalonPas on achy body parts, use lots of good lotions on skin as it is really drying out, painted nails a dark color to try to keep out UV damage to nail beds, take B6,B12, and l-glutamine to try to reduce nails issues, using a saline spray trying to keep sinuses moist instead of all demoted out.
Also if your MO didn't give you a list of "when to call the doctor", ask for one.
You will have good days and not good days. Take it one day at a time. Tomorrow is my halfway point. 8 doses of chemo down, 8 to go.
Best of luck to you!
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HelenFaith- thank you for the link. Really interesting!!
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tonyaberryman- how are you doing after Taxol 3?
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