For those starting TAC in March/April 2006....

jpsgirl96

Just FYI - I get some decadron in the pre-chemo drip but no pills. Seems to be fine. I do take a diuretic for high blood pressure, but I don't know if that's why no more steroids than that. No fluid retention in the first two treatments, and nausea is controlled with Compazine and Zofran.

MollyK

mindy, i got a prescription from my doctor today...diflucan and also a mouth rinse. glad to hear yours cleared up quicklly. this is more painful than i imagined mouth sores to be.

paula, i think i'll try that smoothie maker idea right now. any relief would be wonderful.

thanks guys,
molly

MarciaA

Hello to fellow TAC sisters. Well I am a week past my third TAC. So many have said that the third TAC was the worse. SO far I have done ok except for tingling, numbness in my feet, toes, hands and nose and tongue. The numbness will come in waves. I am taking 100units of B6 daily and I still have the numbness. I am noticing more clumbsy behavior on my part. I went in for my nadar check today and my wbcs are doing ok with the neulasta but my rbc count is slowly dropping each treatment. I am having hot flashes that keep me from sleeping. I am on 1000u of vitaminE for that. I saw my nurse practitioner today when I was getting my bloodwork and she gave me a prescription for GABAPENTIN 300mg. which is for the neruopathy to take one at night. I will let you know if it works. She also said she would check with my doctor to see about backing down a small percentage on the taxotere portion of my TAC. I am hopeful that will keep me from losing my feeling in my feet and hands. I also have gained 8 pounds since I began treatments 10 weeks ago. The nurses said that was not uncommon but it would most likely come right off after chemo but I sure feel like a porker and my favorite jeans are getting tight
I was really feeling kinda down thinking I couldn't do this but once again something happens to encourage me again.
I hope you all are doing ok, The nurses there are so caring and always tell me TAC is one of the very hardest protocols.
Take Care and I will let you know how the gabapentin works for the neuropathy pain.
MarciaA.

jpsgirl96

Marcia, Thanks for the report from "the front" - sorry to hear the numbness is getting worse. I hope they can back down the Taxotere enough to give you some relief from that, and that the interventions work. What a drag...I'm not sure cheery words about 'half way there' are all that helpful, but from a third of the way, half looks pretty good! Everything is nearly back to 'normal' or at least 'the new normal' for me on Day 8. Everything (tummy troubles, fatigue) was maybe 10% worse this time, I think. Still not all that predictable. Leigh

peejay

Well, my face REALLY broke out this time around. My third Tx is this Tuesday, wonder if my whole face will turn into a pimple this time?! lol

This will be my first time with the port, kinda scary, but I'm sure it will be a lot better than before. I've been worrying off the steri-strips that are left on the wound site. It's been 2 weeks, and the onc told me last Tuesday to start soaking them off would be fine. The are pulling and it's like someone is pinching me lol.

This week was fun, but tiring as my mom was in. I think we did something everyday. Now it all caught up to me, and I'm tired durnit!

This will be my first time not taking the evil decadron in pill form, but just in the drip, that should help me a ton also.

Tomorrow (Sunday) is just going to be family day. Getting my daughter a new bike that I promised her last weekend, but we couldn't get out. Then maybe go to the wildlife preserve and just all hang out together around the house and relax.

Hope everyone's weekend is going ok!

Paula

MollyK

After 4 days, my mouth finally feels better, thankfully. Now I am wondering about the hair. It has been 10 days since my first tac treatment. Can anyone tell me what it feels like to lose their hair. My scalp has been very itchy. I am nervous. Anyone tell me what day they noticed their hair falling out? Does it all come at once? When should I shave my hair off? This is going to be difficult on me since i have long hair.

jpsgirl96

Hi Molly, it's Leigh. Mine was also itchy and then sort of 'hurting' starting around day 12; it stared to come out (I could see it on pillows; if I ran my hands through it, I had a bunch of hairs on my hands) but not until around day 16 or 17. My husband used electric clippers on Day 18, and the scalp felt much better. Once I got the 'baby chimp' look, around the time of the second chemo cycle, we shaved it with a razor. It's hard not to worry about it, I know. Everyone is different but from what I've read, my timing is somewhat 'typical'. I wear a wig to work, and otherwise hats and scarves or 'just me'. Leigh

mindyk

Molly, My hair started coming out a little on day 11 and 12, more on day 13. On day 14, I had my hair cut really short with the clippers ( down to where I only had stubbles left) My head started hurtung around day 10 and had a tingly feeling. But it felt alot better once I got my hair cut off. I also have a wig that I wear when I go somewhere, but when I am at home I either wear a hat or just go natural. Hope this helps!!


Take Care,

Mindy

peejay

Molly, my hair started "hurting" around day 14 and then falling out in clumps at about day 17. My sisters and I had a shaving party, and gave me the GI Jane look, and it felt so much better. I too had long hair, halfway down my back, so my scalp was pretty sore until we got rid of it. The hair that is lol

Paula

MarciaA

Hi Paula, The port is not too bad. Get them to spray you with freezing spray before they access it. They wear gloves and should always use sterile technique when they go in. The first thing they do is take out the heparinized fluid in the chamber then they will draw blood to make sure it is still in place. At that time they do a cbc before I start my chemo. Once the blood work checks out they start the IV with decadron and zofran,then I usually get the adriamycin first then cytoxin then Taxotere. When they finish they will put another heparin lock in the chamber. I notice that my port and the veins around it are a little sore for a few hours but then I don't notice it. I am happy you got a port, it will save your veins for when you are a very very old woman and may need them then
About the steri strips...I had an area that wanted to re open so I got more steri strips and re taped myself for another week and moved the tape to another area. I hope you are completely healed by now.
Good luck with TAC #3. I hope you had a great family day.
MarciaA.

karen1956

Hi Molly - I too had long hair - before my first chemo, my girlfriend cut my hair in a "bob" then two weeks later after my 1st chemo ( she cut it short-short. My hair started to fall out on day 12 - the night after it was cut short-short. I had ran my hand over my head and there was hair. It seemed to fall out most in the shower. This continued to day 18 then stopped. I still have some hair - my control is keeping it and not shaving it off. Now I wonder when the rest will go - I am day 10 post TAC chemo #12. Still have my eyebrows, but the hair on my legs and arms seems to be thinning as well. To work I wear my wig or hats. A friend gave me a few hats, and some of the people I work with knit me hats - but they are hot on the warm days. My husband just got me a "Cheers" pink ball cap. I am wearing it today and will wear it to work tomorrow with a pink sweater. At home, I ususally don't wear anything on my head unless it is cold. Before my hair fell out, my head kind of tingled! Karen in Denver

JulieMcKeehan

Hello Fellow Bald Girls:

Well my hair story is about the same as all of yours. It started coming out around day 12 and by day 16 it hurt so bad that I shaved it. The sad news I have for all of you is what my chemo nurse said last Friday, Treatment #2. She said that on TAC that we will all loose all of our hair (that means eyebrows, eyelashes, arm hair, pubic hair) by somewhere around treatment 4. This is at City of Hope and they always seem to be very on top of these things.

So here is my question? Does anybody know any more info about this? This so bummed out my day.

Regards,
Julie

MarciaA

Julie and Karen, I wish I could offer hope for retaining hair but on TAC I was also told it was very unlikely. I finished #3 last week, My eyebrows and lashes are very thin and getting thinner. I buzz cut my hair on day 14 after first TAC and now I have individual hairs about 1/4 cm apart on my head that are growing. I don't know if they are ones that never really fell out or are growing on their own. I recall being completely bald 17 to 21 days out and now this!! It would be interesting to see what types of hair grows back!
Hope your hair will hang on!
Best wishes!
MarciaA.

jpsgirl96

Hi Julie, I recall seeing a couple of TAC women who did NOT lose eyebrows, but some did. My onc told me right up front that hair loss was a given, but I didn't make detailed inquiries about which hair. As with a lot of side effects, 'your mileage may vary'. I'm trying to look at it this way - it might (or might not) happen; it will be when I have 2/3rds of the tx behind me, and it will all start growing again when tx ends...for what it's worth. Leigh

peejay

Well, heh, I am losing the old pubic hair slowly. Got my 3rd treatment this Tuesday, 4/25. So far my eyebrows are hanging in there, but my eyelashes seem to be getting in my eyes a lot, which makes me wonder about them. Hven't had to shave in about 3 weeks, which is nice. I have sort of hairy arms (light colored) and I noticed that it's thinning out near the wrists a lot too. Oh well.

I have a question. Does anyone go to their treatment alone? My sister has the flu and I do not want to see my DH take off another day on account of me, I feel bad. I think my onc offers rides both ways, and I know the American Cancer Society has something like that too. Jus tnot sure if I could handle it on my own, and wondering if anyone else out there has?

Paula

MarciaA

Paula, That is a good ? I wonder if anyone has had an accident and been charged with being impaired after having chemo. I personally feel out of it after my three hour treatments. I guess I could drive but I wouldn't want to. How far do you live from your chemo facility? Then again would you be out in the 5pm traffic? I worry about you trying that, Maybe this is one time you should not try to be ms independent and take a ride. Cancer is dangerous enough without trying to chance it on the road. I personally hope you find a ride. Your safety is much more important to all of us!
MarciaA.

MarciaA

Dear TAC sisters, I see where many of you are about to take #3 TAC. I notice a significant level of numbness (neuropathy)in my toes and feet this last time. It took about 3 or 4 days post treatment to feel the intensity of it. If any of you that take #3 in the coming days notice any increase in any of the side effects would you mind posting them? Maybe we can have a HALF WAY celebration as well. Thank you and I hope everyone is doing well.
Take Care
MarciaA.

jpsgirl96

Paula - I'm with Marcia, I would not want to drive after (and prefer to be driven before, mostly so I arrive relaxed), but honestly I would be fine doing my treatment solo. I've had buddies both times but my husband left for an hour or so and I just listened to music and chilled.
Marcia - I'll definitely let you know after #3 (it's next Thursday, the 4th, so I have a while). Based on some of th cumulation from #1 to #2, I wouldn't be surprised to have some new effects show up. Hope you are feeling okay??? Leigh

baldeagle

Hi All,

I am a bit behind those of you who started in March. Just on day 7 of my first TAC. I want to tell all of you how important your posts have been for me. The last couple of days my head has felt better but I have been having major stomach pains - like stabbing in the gut. I went through a lot of old posts and found that some of you had been thru the same thing. I will put up with it and try to adjust what and how much I eat.
Many of the suggestions for how to deal with this protocol are very helpful. Jusy wanted you all to know that what you write can be way helpful down the road.
I also know that my hair will go within the week - so I am planning a shaving ceremony to mark endings and new beginnings. I hope that will help the emotional end of things. But the posts also made me realize that it wasn't just head and pubic hair to gojavascript:void(0)
but also all the stuff on my legs (yeah! for the summerjavascript:void(0) and my arms javascript:void(0)
(I like that fuzz) and the bushy eye brows that I have always had ambivalent feelings about but now don't want to lose. For someone who has never paid too much attention to my appearance beyond being presentable I find myself markably concerned and emotionally impacted by all of this. Hmm - there must be some learnings in there for me.javascript:void(0)

Jeannette

MarciaA

Jeannette, Congrats on your plans to have a shaving ceremony. I decided that I didn't want to have a bad memory of my hair falling out in my hands or on my pillow me so I took control of the only thing I could and had a shaving event before that happened. There is so much stuff I couldn't and still can't control about cancer but I am glad I found the courage to shave my head. Whatever you decide will be right for you.
Hang tough with the treatments...as you can read we are all having good and bad times but it is comforting to know we are all taking the same meds...tough ones at that.
Glad you are feeling better.

Leigh, Good luck on #3. I hope it goes easy on you this time.

Everyone have a good week!
MarciaA.

peejay

About driving, the onc's office (and treatment center) is about 15 minutes from me, and my appointment is at 10am. I'm thinking maybe of taking a taxi to get there, and then having my hubby come get me. That way he would get a half day in at least. I know we could sure use that money!! I don't know about the rest of you, but ususally that night before I cant' sleep no matter what I do or take!! I borrowed my brother's portable DVD player so I would just watch something funny while I sat there. I'm still thinking about the whole thing. I'm usually a coward about doing things like this alone, but it's like having BC has changed EVERYTHING about my attitude. For the good no less.

Marcia, I will let you know after number 3 here what goes on. I'll be running with less decadron (thank goodness) Just getting the drip this time. Although so far I haven't had and numbness and tingling at all. It seems to take me about a treatment longer to get the side effects a lot of you are getting. Like after number 2 I had mouth sores, that kind of thing.

I'm off to school to see my daughter's music program in about 15 minutes. I asked her jokingly if I should go bald, her reply. "Mom, I dont' care, I'm just glad you can come!" Well, I'm going to wear a white scarf so she can't miss me in the crwod. God I love that kid more than anything!!!

Paula

MollyK

Jeannette, I am only on day 11 after my first TAC so we are pretty close to the same treatment days. I agree, the comments and posts of everyone here are invaluable to me. Given everyone's hair experience, sounds like it will be coming out at anytime. I guess I will have my hair shaving event this weekend. Scary!

Molly

karen1956

Leigh - I too have TAC #3 on 5/4. Marcia I will be sure to post sometime after the treatment. Today is day 11 post chemo #2 and it is the first day I feel fairly good since I started chemo. After my 1st chemo I had an eye infection, then I got a sinus infection. My stomach was bothering my last week, but now I am on Nexium and it seems to help. Other than the killer nausea and fatigue and indigestion and occasional diarrhea, I have not had really any other side effects (yet) from the chemo. I'm just expecting all the rest of the chemos to be miserable based on the 1st two. My husband is planning that I will need to go for IV hydration the days following chemo like we did the last time. I went for my CBC today and my white blood count is good. Karen in Denver

baldeagle

Molly,

I am not looking forward to it either - but am trying to put it in the most positive light. Thus a ceremony (aboriginal) with several close friends, to celebrate new beginings.

On another note - I have metal mouth - and little tastes good. Does any-one know if this lasts the whole time or does it subside between treatments? Four months of this and I shall not be a happy puppy.
Jeannette

marywo

metal mouth only lasted about 4 days each treatment for me.

jpsgirl96

Jeannette, My 'funny taste' (dulls everything except salt) lasts for most of the first week, gradually improving after day 4 or 5 till it's almost normal day 8 or 9. Some things (sweets) are never really vivid. Leigh

mindyk

Paula, Just wanting to wish you luck tomorrow on your #3 treatment. I have #2 as well tomorrow. I am not taking the decadron this time around so hopefully I will still do ok. I had to many side effects from it so we are going to try it without.
Hope everyone is doing ok.

Take Care,

Mindy

peejay

Mindy I'm not taking decadron either this time, just in the drip. What a pair we are!

Also, my DH is taking half a day off at work to take me. So no driving!

I hate the night before, I can never sleep... Good thing I have some online games to keep me busy! I play at pogo.com does anyone else go there??

Paula

MarciaA

Greetings to All TAC sisters and best wishes go out today to those getting treatments -Paula and Mindy. (Paula I am glad you decided not to drive) I hope those not taking decadron do well this time. I am reluctant to not take the decadron after reading all the stuff it is supposed to be doing for me. Let me know how it goes without it!

Jeannette, metal mouth lasts me about 8 days but plastic utensils make it much better

Karen, Seems like it takes me an extra day each time I take a treatment to get back to feeling human. Took 9 days for me for #3 but if you get the side effects managed it may not take you as long. I am inpatient and I get frustrated easy. I had been told #3 would be the worst one. Time will tell. Guess we will be recovering from our treatments the same time next week!

Leigh, I agree that salty taste is the only thing I can taste all the time and of course it adds to all that fluid weight I am building up. (anybody else out there gaining a few pounds yet?) I got moved up a day on my schedule so I could see my doc the same time as my treatment so I will be taking TAC #4 on May 3.....guess I won't be celebrating Cinco de Mayo...But at least I can eat some chips!
On a more positive note...I started taking Neurotin 300mg at bedtime 4 nights ago and my neuropathy symptoms have greatly improved. The tingling in my feet and numbness are much much better. The B6 just wasn't enough so take heart if any of you start getting the numbness from the taxotere. I am still gonna ask my doc if he can decrease it a small percentage on my next time cause it is very scary not to be able to feel your nose or tongue or to start to feel pain when it gets intense and sometimes it just comes on you especially when I get fatigued.

Hang tough everyone! We have a common enemy that needs it's butt kicked!
MarciaA.

baldeagle

Paula, Mindy, Marcia, MaryJo - thanks for getting back to me on the metal mouth. A few days of metal mouth I can live with. I can't find anything that really takes it away - and I love my food . I will be patient.

Jeannette