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Godd Monday morning all,
I am back from my weekend at the dance competition with my daughter and Mom...we had a great time and it was wonderful to get away and relax...My daughter did win a gold medal for her solo and her team won a gold for their production number. So we did well...back to real life now.
Put me on the list for this Thursday...
Last Thursday I woke up all itchy and swollen fingers...couldn't stand it by 10:00 so I got some Benadryl...Called the onc and he said it could be the chemo or something I got into or ate. Don't know what because I didn't change anything. I tend to think the swelling is the Taxotere side effects....itching?? don't know. So I have been taking the Benadryl when I get crazy with it. Don't like taking one more thing. But oh well.
I spent a while this morning catching up with all of you, since being away....
Marsha you could have joined my pity party, which was held the same week as yours!
Still deciding when to buzz my head. Handfuls of hair daily, but just very thin now. The TCH treatment doesn't cause it to come out all at once like the AC apparently. My head is very itchy and a great deal of it came out this morning in the shower. So maybe soon.
Hope everyone is well....talk to you all soon~0 -
Morning Ladies.... Good to see you are doing well.
Hi Sybil,
I had the same problem. Not sure if stopping the chemo fixed the red spots on my scalp or I started using NIOXIN shampoo, which is supposed to make your hair grow/stimulate scalp. I also have white blond wispy hairs growing with darker stubble underneath it. Goodness knows what type of hair will end up coming back.
Hi Jan, It is still so good to check in with the ladies here for me too. I feel sort of in limbo right now.
Will not start tamoxifen until I get another pelvic ultrasound in 2 weeks. I am feeling anxious, because I feel like I should be taking some sort of meds now to make sure the BC stays away. It is weird to go from full force taking the Chemo tx to a full stop all of a sudden.
It is amazing how we have to make such decisions on a dime these days....... My head is spinning.
Keep on sailing ladies.
Good luck those of you at the bar this week.
Jel.0 -
Good morning!
Phyllis -- Drinking alone at the bar today -- shame on you. Seriously, hope all is well!
Freethought -- I hope that you post pictures. I can just imagine the staff eating off your head as you sit plugged in to the IV!
Terry -- Congrats to your daughter. How wonderful to celebrate something so positive right now!
Bar reservations:
Monday: Phyllis
Tuesday: Hillary, Catherine, SammieKay
Wednesday: Marsha, Wendy, freethought
Thursday: Steph, Pat, Twink, Terry
Friday: Maisy
OK -- got to go load up on liquids, my usual procedure for the day before ...
-- Hillary0 -
I am so tired of all of this. I don't want to be nauseated, hurt, tired.... all the time. I want to feel like me or at least "semi human." I want to speak to someone on a refund for this cruise!
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I'm on a 3 week schedule so I don't go again until 4/3. That will be my 3rd. I have done really well after my 2nd treatment I haven't had to take any of the anti nausea medicine. I'm suprised that I feel so good being pg and chemo at the same time, but I've been truly blessed and feel really good. Maybe a little more tired than normal. My DH wanted me to ask the doctor if I was getting enough chemo since I haven't been sicker....he's a funny guy!
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Catherine - thanks for the advice on preparing for #3. My best friend gave me portable DVD player, so I am going to rent an upbeat movie to watch during treatment. The doc also suggested that I take a few days off from work after the treatment and get some rest. My 38th birthday is Sunday - so I want to relax on Friday and Saturday so that I can try to be in a good mood for the family. For the next couple of days before treatment, I plan to just enjoy the warm weather we are having here and stay positive.
Hillary - I think we should start a new forum for those of us with young kids. Good luck with treatment tomorrow, I hope it is easier for you than the last. Loading up on liquids sounds good to me.
Question for everyone - has anyone noticed dark spots on their tongue? I just noticed it yesterday and it looks really weird.
Good luck to everyone getting treatment this week, and those who are off from treatment this week - I hope you are feeling better.
Steph0 -
Steph -- I started one -- check it out in the "Help me get through treatment" forum.
-- Hillary0 -
Here I am. Ready to try #4 again. Ugh. I felt pretty good this week since I didn't get chemo #4 last wednesday. I did get the herceptin, and the neupogen gave me two days of backache. It was nice feeling so good for a change, except for the backache. But I am ready to have both of my cocktails this week. I just love it that I get to hit the lounge every week (NOT!!)
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Steph- no I haven't noticed any dark spots on tongue, just my finger nails and big toenails.
Tropicmom- I know about the back pain but mine was after the neulasta shot. All I know is I don't want to EVER have that pain again. The good thing is after a couple tabs of percocet, it was gone. Hope you got something for pain.
I'm feeling good right now and looking forward to #4 on the 29th. Get this dang AC out the way!!!
Pat0 -
Back from the bar - 4 AC down, 4 Taxol to go starting April 9! Quite uneventful - did need the Aracept for low RBC but that was expected. Met with the ONC prior to the infusion so she could explain the Taxol changeover. Gave me a script for more steroids - as Linnie (I believe) said, 5 decadron the night before then they'll give me 5 more when I get there. Doc says Taxol will be a 'walk in the park'. She did ask if I had any SEs from the Neulasta and I didn't so she expects no discomfort that won't be easily controlled with Motrin.
Catherine, Hillary and SammieKay - hugs for tomorrow.
Time to go sleep off some Emend, Zofran and Ativan!
Phyl0 -
Phyllis -- Thanks for the info about taxol. I imagine I'll get the same talk from my onc. I am going to ask about taxol vs. taxotere vs. abraxane. Good to hear that your onc correlated taxol SE with neulasta SE. I've had no SE from neulasta!
Steph and Pat -- I just started to notice a brown spot on one fingernail. This does not bode well for taxol!
Tuesday: Hillary, Catherine, SammieKay
Wednesday: Marsha, Wendy, freethought, tropicmom
Thursday: Steph, Pat, Twink, Terry
Friday: Maisy
Good to hear from Alyson, TinkC, Jel, and swimmingmom!
-- Hillary0 -
Sammie Kay --you may or may not be the oldest, but you're a serious contender for the sweetest. What a nice note for Marsha.
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TinkC, We are on the same schedule --- Chemo #3 on April 3rd but I am not pg, in fact my daughter just turned 37.
How great to hear that you are doing so well. And you sound very positive. I am inspired... Sybil0 -
Hillary,
Thanks for the tip on the skull covering...I'm going to shop for one now. I do think, however, that most of my problem is with that particular wig...it's too small (sigh). The one I've taken to wearing more often is more attractive and more comfortable. Had somebody tell me I looked like some 'young babe' ... from behind. Right, thanks.0 -
Carynn,
I haven't been wearing one of those nylon caps, no. Nor am I wearing a 'wig gripper'. I'm going to try one out although, my problem isn't with itching or an unstable wig, it's the tension (I think) that's giving me the headache.
Did you say 'free'? Free wigs...I'm so jealous. I've spent way too much money on wigs...but I am planning to donate them when I don't need them any longer. All, except that is, the one that makes me look like a hot babe (from behind).0 -
Oops...just reading Sybil's post...maybe I won't try one of those nylon cap thingies after all. No need for more tension on my skull.
I don't know if I will ever be able to go bald...to vain. No red bumps but I have discovered a previously unknown (to me) light red birthmark on the back of my head...the things I've learned.0 -
Catherine,
Your description of the spring flowers was wonderful. I love gardening too although haven't done much since I left Ca. I'm hoping the urge overtakes me soon here...we have a tremendous piece of property with so much potential. I just need to get moving.0 -
My mouth still tastes metallic...I'm going to ask the onc nurse on Thursday whether Thrush might be present. I don't think so though, my mouth is getting back to normal now (since AC#3) -- less gummy and icky, just metallic tasting.
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Yep, I'm up on Thursday...my LAST AC -- YAYYYY! Then on to the unknown effects of Taxol. I've been so lucky with the AC, very manageable. Now, I'm searching for the right Glutamine to help with some of the known Taxol side effects.
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Ok, ok, UNCLE! I will now admit that # 3 has kicked my butt.
Friday was good, as I mentioned, went out to dinner, but hit the wall early. While I did get some light housework done over the weekend, I really didnt move much Saturday or Sunday, and today is just yucky. Worked from home in the morning, then off to the office for only 3 hours. SEs arent really anything major, just like everyone said, more of an accumulation of symptoms. Looking forward to tomorrow or the next day for normal to return. 
Twink love the hot babe comment! I took back my red wig and wore a new blond one today; got lots of compliments on it. Im up to 3 now which does make it nice to change them up.
Hillary looks like you got those reservations down girl! Ill have big shoes to fill next week, but my week does seem to be lighter.
Marsha hope you had a nice trip and made it back safe and sound, but with some good stories to share!
Well, thats it. Im tired and calling it a night.
Smooth sailing and sweet dreams all!
Carynn0 -
Hillary, SamyKay... I will be holding your hands virtually tomorrow, hooked to the IV pole... and enjoying classical music for good vibes to reach you...eh, this first round of 4 went fast, turns out...
Hang in there...
A restful night to all...
Talk to you tomorrow,
CatherineH0 -
Carynn-
I am having the same - #3 really kicked my butt too! Compared to the last 2 tx - I can't believe what a difference this one has been. Like you said, no real SE's, just ikky really. Lots more tired, and stomach just off enough to make it more difficult! Ugh!
Makes me wonder a bit more about #4- aaaaahhhhh!
Jen0 -
Hillary, I read the thread you started: how I can understand your need to communicate with others moms on this, such a different situation... so much to be concerned about. Good for you to lead this group, this should bring a lot of comfort and help to (way too many) young women with BC and small kids.
Hugs,
CatherineH0 -
Good morning -- a quick note before I'm off to my last AC!
It does seem that AC#3 kicked all of us in the butt. I'm a bit anxious about AC#4 ... I'm definitely taking my ativan on the way!
Twink -- The wig gripper is different than the nylon cap. The nylon cap definitely caused me tension headaches. The wig gripper doesn't. It's basically the same material as teething plastic. You wrap it around your head and secure it with velcro, so you can make it the right tension. The wig then sits on top of it, away from your head. I got mine through ACS from their TLC catalog. I also got my wig from there -- it was cheap, only $40! The free wigs are from your local ACS office. I still haven't phoned to make my appointment to get one.
Catherine and SammieKay -- I'll be holding your hands today!
-- Hillary0 -
Good morning. Just checking in to say hi. Stayed home today - feeling better, but also feeling like I needed to rest / recover. Jen - that's exactly it - off - But each time I see my tumor shrinking, it's a lot more bearable.
Hillary - # 4! That is soooo awesome! Like I said before, hard to believe that in the next few days we'll be comparing our taxanes!
Have a great day all and best to those bellying up to the bar!
Hugs!
Carynn0 -
Bacl from #4. Uneventful while there -- no funny stories to tell.
I did question onc about taxol vs. taxotere vs. abraxane. He claims that side-by-side studies of taxol and taxotere has shown that taxol slightly better efficacy and slightly fewer side effects, one of which is that fewer steroids are required. In the rare cases that someone is allergic to taxol, they will try taxotere, although it has to be given every three weeks.
Taxol and taxotere both suffer from the fact that they have to be dissolved in a particularly nasty solvent in order to get into the cells. Abraxane is different -- it is solubulized in albumin, a protein, and has better entry into the cells. So far, abraxane has only been studied in advanced metastatic bc and it looks good. There are no studies completed on abraxane in early-stage bc, so it's not known whether it will be efficiacious for early breast cancer as well. I believe that there are trials studying this.
So, taxol for me. I don't have to take any drugs before hand-- they give all the steroids in the pre-IV. Also, no Emend, zofran, or decadron after. They said that the worst SE is flu-like symptoms about 3 to 4 days after. Since I haven't experienced those with the neulasta shot, which I will continue, I'm hoping I won't get it with taxol.
I forgot to ask about the L-glutamine.
OK -- I'm a bit loopy because of all the ativan I took ... more later.
Catherine and SammieKay -- I know that you're out there somewhere and I'm thinking great thoughts about you two!
-- Hillary0 -
Hi all, I've been quiet, but have been reading your posts and cheering you on, while my Mom goes through chemo with you. She has finished her 4 dose-dense AC, and it has been rough. First two cycles were tolerable. The last two have been increasing nausea and fatigue. She has lost over 15 pounds, and lost 8 in the last week. Can't keep much food down, and we are starting to really worry about her. She met with the onc today, and was sort of hoping he would say she could opt out of Taxol, but he is insistent that there is a 20-25% improvement in recurrance rates, and isn't too concerned about her overall status. She will wait an extra week before beginning. I just want her to be able to eat and drink a little something in the next week. Throwing up the anti-nausea meds messes everything up. I wonder if the dose-dense cycle was too ambitious for her, at age 70. Any anti-nausea wonder drugs? She has tried Zofran, Compazine, Ativan and Decadron, but wasn't really good at taking them pro-actively. She would wait to feel bad, then take them. (And lately, throw them up.) I have tried to get her on a better schedule, but we live in different states and I'm not always there.
Hang in there, all of you. Marsha, you make me laugh, and Catherine, your descriptions of food are inspiring.
Peace to you all, Julie0 -
Julie, sounds like maybe the DD was a bit much for your mom at age 70. I have heard with the taxol that the EASIEST way is the X12 weekly. That way smaller doses are given at a time. But I don't think naseau is a side effect. (?) And thank you Julie, Marsha is taking a bow.
Hillary, WOW thanks for that info. No more questions from me about that subject. I will do my DD taxol and be happy to do it.
Hey Carynn glad you are getting your breath back from #3. Whew! I go for #4 tommorrow, but dammit, I'm gonna celebrate no matter what! HALF WAY DONE
Can't comment on the wig, skull cap vs. wig gripper discussion, still going out total commando (sorry Barbie). On my way to my ocn office today I had the top down, gettin some sun on my head, be-bopping to the music and my phone rings. A guy I know from the theatre, not godd friend but I've done shows with him. He said he just "saw the cutest bald headed woman in a blue convertible zip by" and he just wanted to say hi, you look great! My problem now is my head is getting some tan but so is my face and one is still darker than the other. Maybe a sun viser, would that look dorky? LOL
Twink, love the picture and the hot babe story! You go girlfriend.
Hugs on me, hugs all around, Marsha0 -
Marsha -- Can you try to remember to ask about L-glutamine?
Julie -- My oncologist says that he doesn't worry about someone gaining or losing 5 to 10 lbs during treatment. 15 lbs sounds like a lot to lose. When she can keep food down, I hope that she's trying drinks like Ensure to get high quality proteins and nutrition.
I'm pretty doped up from all the ativan, so it's early to bed for me. Catherine and SammieKay -- hope you two also had an uneventful time of it. Good luck tomorrow for: Marsha, Wendy, freethought, tropicmom. Remember, any additional info on taxol situation appreciated!
-- Hillary0 -
Hillary... I am back from the bar... uneventful, nice social interaction with other patients and nurses, a lot of reading and listening to music... I feel great for now (was back home before 4pm), hope it will not get worse than #3 which was very gentle on me, after all.
Next is Abraxane for me (I am in a study for this drug applied to early stage BC + Avastin)... it will be 30 minute infusion and no premed (no steroids or anything). If neuropathy is too bad, I'll take glutamine, but they do no promote it before hand... No neulasta shots either anymore (apart from the one tomorrow), since it is not lowering your counts... sounds pretty good to me...
Well, I will go cook apples for dessert...
You all take care, I'll be back later this week...
Marsha and your bar-mates... good luck for tomorrow...
Hugs,
CatherineH0
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