April 2011 chemo

profbee

Geochache, on Taxol, I've had leg cramps--usually lower in the calf area, but then as time went on it seemed to go higher to my thighs.  I never had abdomen pain like that though.  My stomach often feels well...I wonder if it's hunger or irritation.  It sort of hurts and I feel kinda nauseated, but I'll eat something very plain and feel a bit better (and take the anti-nausea drugs too!).  I hope you're feeling better!

Anonymous

Sue/Sudz: How low do your platelets have to be before they cancel your chemo? (Mine hit 59 last week, but they're back up again this week.)

Anonymous

Profbee: I vote for shaving off the fuzz and going bald if you can get away with it!

I'm proud of myself. I went out for the first time today without a hat. My hair is 1" long and fuzzy, with a bald patch on top from where I got frostbite from the cold caps (which were expensive and totally didn't work). My hair has acted oddly. I never went totally bald except for a stone-cold bald 1.5 inch diameter circle right in the front middle of my head. I kept about 10% of my hair from the torturous cold caps, and apparently meanwhile the rest started growing back i. I finally cut off those long, earlobe-length wisps and was amazed to find this fuzzy cap of hair covering my entire head underneath! So I am not bald!

I used to look at women with super, super short hair like mine is now and think "Man, that's an unattractive haircut, and such a statement she's making!" Never once did it occur to me that they may be cancer patients.

I wonder what people think when they see me.

Anonymous

p.s. My normal hair looked just like my avatar. She is clutching her left breast, too, which is the one I lost. Oh, and she's staring at a shipwreck that she just barely escaped from.

I can relate.

geocachelinda

Oh I am just in so much discomfort.  the hydrocodone does not help much.  Just horrible shooting pains all up and down my legs and into my abdomen.  Torture... 

Anonymous

Linda: I am so sorry you are hurting so badly! Did the hydrocodone work? Can you call your after hours doc for something stronger?

Would a hot bath or shower maybe help? 

Merilee

I just looked up the difference between taxotere and taxol. Who ever told you that the side effects would be weak, were not being honest with you gals. Taxol sees more pain as  a side effect than taxotere which was a living hell for me. I would stock up on the naproxin  and stay on it for maintenance if I were you. Als ALpha Lipoic Acid is a good supplement for neuropathy.

It makes me mad because I was never prperly  prepared for all the side effects ot Taxotere for my first treatment and it felt like it was going to be the end of me without the proper remedies for the side effects I had.

Anonymous

Welcome back, Merilee. You're scaring me about Taxotere, since that's in my future in about two months. I thought AC was the hardest drug to tolerate, but now everybody's telling me what a nightmare the taxanes are.

Are any of you ladies having long-term side effects after discontinuing Taxotere or Taxol?

Sudzinvermont

Windlass, platelets should be in the 145-370 area. Three weeks after my last treatment, when I should have been getting the next round they were down to 57. So we just did the Herceptin and held off on the Taxotere and Carbo. I went back this week and now at four weeks past my last T&C I am still only at 61...not much of a recovery. I go back next week and we'll see what happens, either way the Doc says no more Carbo for me. The spreading out of the treatments is starting to wear on me a little. I look forward to that "good week" and when this happens you don't get it, just different shades of the crappy weeks.

I haven't had much trouble with the Taxotere... but I can't keep up with what se's are from what part of this crazy mess.  I have had a couple of weeks of only Herceptin giving me a window into the future. With only the Herceptin I really only had muscle pain in my thighs and calfs, so I guess I'm stuck with that for a year.

Now I won't be doing the Carbo the last two rounds so I may be able to see what was Carbo se's and what are Taxotere se's.

 I'm like a big bald science project!

xo Sue

pawprintgirl24

so far taxotere has not been too bad for me just the very very tired the week of chemo then it really seems like i get better and bettre every day. but i can tell you that this heat down here right now in the south is driving me mad! and i think that it is not helping in the tired department!!! i'm on TCH and have done 5 of 6.... but everybody is different!

sweetcorn

Just got through with my last chemo treatment yesterday.  Started April 6.  Happy dance!!  Am anxious for the hair to grow again.  The Cytoxan was awful, but the abraxane only treatments were well tolerated.  Best of luck to all who are still having such a rough time....we are all in this fight together!!

 Jane

Merilee

Sorry Windlass, that was rather insensitive of me. I apologize. I was not thinking it may scare someone, only thinking that it is best to be well prepared with something for pain so that it does not happen.

I'm with you Jane, I am ready for some hair so I can take this scarf off my head, it is about driving me nuts!

I finished 3 weeks and 1 day ago. I still feel fatigue, and I have no appetite, Anyone else feeling this way? I have to make myself eat.

geocachelinda

Sweetcorn, congrats on your last chemo!  Praying for continued strength for you in your fight!

My Dr. ordered Lortab for me because the hydrocodone really isn't working that well.  I was just told that the pain probably won't go away.. I am getting a little numbness in my fingertips as well.  I guess I am getting the neuropathy.  Lovely.. 

Merilee, I'm not used to being bald yet either, I do go outside in my yard without a hat on sometimes and my neighbors have seen me but I'm not quite ready for the public unveiling in general!  LOL

profbee

Tomorrow is my 15th of 16 weekly Taxols.  I had some random leg cramping, but no PAIN.  Certainly nothing I had to get a prescription for.  Other weird stuff--exhaustion, nails lifting, exhaustion, ummmm...exhaustion, but no real pain.  I guess I was lucky.  It is cumulative though, so this last month or so has been really tough...oh, not sleeping, that's the other thing...insomnia.  LOL.  

I DO rock the bald look.  I couldn't handle the wig, and the scarves just annoyed me, and I found that I took them off when I got home, so why not let everyone deal with me.  I swear more people STARE when I wear the wig.  I guess they're looking to see if it's a wig.  LOL.  Bald, they know they shouldn't stare.  Mostly little kids stare--mostly little girls--wondering why this grown woman doesn't have hair I guess.  But, I just smile and wave.    

Linda, I'm so worried about you and this pain and them saying it won't go away.  Whenever I've had a bad SE, the doc and nurses have all been chiming in "we will help you."  So, I'm just surprised.  I hope you get some comfort from the Lortab.  It's just not fair that you'd be in pain like that.  

Oh, and yeah...my fingertips are totally numb.  And my feet..some. 

CarlaB76

Profbee...don't say insomnia!  I got 1 hr of sleep last night and that was with a Xanax and an Ambien CR! And my 2nd taxol was today.  It went well, port accessed on try one (found out that it is not a power port). And I did get a nap this afternoon for a couple hours.

Linda, I'd definitely push on your team for better pain management.  It's just not acceptable for them to tell you that it sucks and you'll be hurting.  I've started with some L-Acetyl Carnitine hoping to stave off the neuropathy.

Sweetcorn!  Way to blaze the trail, baybee!  Congrats.

Windlass - I've always loved your avatar, but with your explanation, I love it even more now.  Beautiful!

geocachelinda

The pain is a little better but I have to stay on top of it with the meds.  I thought I was getting something different and they just gave me stronger hydrocodone!  This pain is so bizarre rippling up and down my legs from my lower back into my feet.  Sometimes in my hands etc..I am getting numbness in fingertips a little.  I hope this isn't permanent.

jackifp

Windlass - we talked a bit about hair when we were losing it (no pun intended, haha), that mine was a mass like yours, but all turned grey (silver - whatever - I was proud of it - it took me 40 yrs to get it there!) Now I'm wondering about your 1" long...is it red? Must be gorgeous, so yes, flaunt it. Mine, on the other hand, according to my good friend, makes me look like a duckling - white fuzz, teehee, just what I always wanted...

artiecat

Okay -  a new take on chemo brain.  I got confused leaving a parking lot today that I entered a Burger King drive through by accident going the wrong way.  As I backed out I ran into their sign and broke it (damage to my rear bumper area).  The manager came out and of course I started to cry.  Ugh.  Now I dont want to get into my car.

jackifp

Artiecat - I'm sorry that happened! I hate it when I not only pull a dumb one, but compound it. And we're so emotionally shot these days, it's hard to just act normal, much less cope with our own very human errors. Big hug.

sarahlou1967

Windlass - I've just done round 5 of taxotere/herceptin and up until now I have not experienced any really bad side effects, although I have got numb hands and feet not all the time but I am aware of it most of the time I will mention it to the onc when I see him before my last and final round 6 which is on the 26th of July. But really its not that bad infact I found the taxotere easier to deal with than the FEC (red devil) chemo, I have not had too take any sickness meds at all, occasionally I take a paracetamol for headaches and to help cool me down when I get a hot flush which seems to have got stronger the more taxotere I have. Excuse the detail but I have had the most severe case of the shits!!!! again not so bad I have not had too take anything for it, but enough to make me not want to go too far from my toilet. The other thing I have noticed is that my trunk from underneath my boobs down to my stomach seems extended swollen it goes down at night when I am asleep when I get up and start the day ie: eating and drinking it starts to extend has anyone else had this????

My hair is starting to come back as well, this worried me at first but now realize it seems to be the normal after reading some of the recent posts, its very soft and baby downy hair at the moment and barely there but it is there and I am looking forward to having some hair again, I have always had very long hair even as a child, being bald has been ok but I want my hair back now, long hair defined me as a woman it was all about my hair and not so much about the tiny boobs I have which shall be gone by the end of September. I just want to feel like me again. I have not worn my wig once so far and probably wont wear it at all, have been wearing scarfs and skull cap type hats, not quite brave enough to go out without wearing anything but admire those that do, well done Profbee.

Geocachelinda - So sorry to hear you are experiencing pain, I would keep on at them if this continues until you get something to take the pain away. 

Sending Love and Light to you all

Keep on keeping on everyone

Sarah Sweety xxxxx 

Merilee

Articat I can relate to your apprehension to be behind he wheel at times.

RangerMom

Big hug to all this moring before I go to work. Linda - I hope your pain eases off. I have similar pain but mine doesn't sound as bad, mine is from my spine on down, shooting pains and sometimes hard to weight bear. I'm taking Neurontin but itmakes me so sleepy, just take at night.

ARtiecat - I know what you mean about driving - I think I went through a red light the other week and almost got hit. boy wasI lucky - just told me that I have to pay even more attention. Thank God we can cry on each other's shoulders. 

Merilee

Amen to that Ranger mom. I have balled my eyes out while writing on this thread. A very good therapeutic and healing release of the tremendous stress that can build up.

artiecat

It is interesting, isnt it.  I would neverhave been able to imagine myself participating in something on line like this.  But now I cant imagine not having had you all with me through this!  I am so grateful! 

I am jealous of people who are stillworking.  I can bvarely get the cats fed in the morning I am so exhausted.

Warrior on!!!!!!!  BTW, I am searching for an alternative word to survivor...unfortunately "phoenix" is taken.  ANy ideas?

Sudzinvermont

Hello Ladies!

Articat, I've had a couple of close calls driving and it's so scary. Thank goodness I live in the middle of nowhere and don't have much traffic, stop signs or lights to deal with, just the occasional cow in the road.

I'm excited for this weekend, one of my favorite "work" weekends of the year..a vintage car show. The weather is perfect and it's another one of those "I love my Job" weekends! Wahoo!

Ranger mom the tone of your post today is so positive, I hope things are going well for you.

Merilee~ I made the truffle recipe you posted on 7/8. Holy Chocolate balls of love!!!~they were so good....you should all make a batch, good chocolate is good medicine.

Here's to a fantastic weekend. Find your joy and laugh until it hurts.

Cheers!

Sue

Merilee

Sue-LOL yes they are de-lish and also good for you, what could be better?

determined3

hi everyone! haven't posted in a while, but i read often. just wishing everyone a wonderful, wonderful weekend! i am off to taxol #4/12 in a few hours. take care!:)

CarlaB76

Determind3:  Glad to see you post, even if it is just a check in.  I hope you are doing well and minimal SEs so far on the Taxol.

Today, in honor of Profbee, I'm rocking the bald at work!

pawprintgirl24

i am on facebook and you can click the like button and it sounds so positive on here this friday, i want to hit the like button!! LIKE LIKE LIKE what everyone is posting!! except for artiecat's little bump! so sorry sweetie. i hate to drive especially when i don't know where i am going.lol

i hope everyone has a great weekend! got a name for the susan g komen race for the cure! we are the breast friends!! its so exciting and something to look forward to! i wish everyone could come down here and join me! that would be a ball!!

Merilee

LOL like boosom buddies LOL