June 2007 Chemo

kath11

Hi all,

Linda, I wish I knew about the side effects of chemo on our bones. If you find out any information will you post it for us?

I had my first of 12 treatments of Taxol on Monday. As Debbie K. said, it took a long time! But I was told that next week will be shorter, only 1-1/2 hours compared to the 4 hours I was there on Monday. I feel pretty good other than a horrible case of diarrhea (sorry, I hate that word) last night. I know it can be a side effect of the Taxol, but my daughter had a slight case last week as did I, so I'm not sure if what happened last night was due to something we were exposed to last week or just a result of the Taxol. It was BAD, but it is over, and I must say it's better than being constipated all week. So far so good. It's Wednesday when I've been told to expect some joint and muscle pain, but nothing so far. Maybe that comes in the weeks ahead. My brain feels far less foggy compared to my weeks of AC. I hate to get my hopes up, but this definitely seems better than the AC!

I hope everyone is doing well. Thinking of you all as always.

xoxo
Kathleen

burquie

Kathleen,
Thanks for the update on the Taxol. I go for my LAST AC tomorrow....YEA!! and then I do 4 dd Taxol; Already I'm starting to get anxious about it. But I'm so looking forward to being at my "halfway mark"! What a way to spend the summer, huh? But hopefully the rest will go by fast for ALL of us, and we can get on with our lives.....forever changed they will be, but we will be ALIVE!
Hope everyone is feeling as well as can be expected!

Bonnie

lastminuteD

Hey everyone!

I have my LAST AC tomorrow too! Glad it's finally here but not looking forward to the side effects over the next few days....................

I will start Taxol/Herceptin on 8/24 - weekly for 12 weeks. I talked to the scheduler yesterday, she said about 4 hours for the first one, 3 to 3 1/2 for the second, third and fourth and then they push it faster as they see how I react but the other eight will still take about 2 1/2 hours. UGH. I can see that I'll probably be taking off of work every Friday for three months. There goes all my vacation time - guess it's a good thing I haven't used very much of it!!

I agree Bonnie - what a way to spend the summer!

Does anybody know when our hair starts to grow back?
NOW would certainly work for me but I know I won't be that lucky!! Not looking forward to losing my lashes and brows either. Oh well, at least we are killing the beast!!

Garnetann - remember to drink, drink & drink some more!! Hopefully that will help you with your side effects. My body sort of had a period (I had an ablation in 04 but still had them till tamoxifen last year!) after my second AC but haven't had any more signs - but, I have started having hot flashes again like on the tamoxifen. UGH.

Good luck to everyone having treatments this week and hope everyone else is having a good week!

Dawn

DebbieK

Well Taxol is having its way with me today. I had my tx on Monday and worked all day yesterday and felt good. Today I am very achy all over and more tired. I can't really tell that ibuprofen or tylenol has had that much effect so I may try one of my stashed tylenol 3's later if I need it. One good thing is no nausea, and I think my taste buds are coming back. I am anxious to see how the rest of the week goes. So far, I would take this over AC even though it hasn't been comfortable today.

Kathleen, we will have to compare notes. I am so glad to only have 3 txs left!

I too am hoping to get hair soon! But so far no sign of that. I am so tired of being bald. I guess there are worse things, but I am getting tired of it all at this point.

Take care everyone, Debbie

tkoski

Hi all,
Well, tomorrow is taxol #2 for me. I am nervous that I will be even more exhausted this time around. Taxol really played a number on my "good" week. I never seemed to recover my strength or energy level, and my body still feels like it has a lead bodysuit on.
I am going to ask my doc for Lortabs tomorrow as with Debbie, the Ibuprofen or Tylenol didn't do stink for the fire crackers that were going off in my legs. I like to think that I am tough as nails but Taxol brought me to my knees. Work has been a struggle and I am dragging by 3 pm each day. After tomorrow I will be able to brag that I am 75% complete with this hideous treatment! I will keep in touch and let you know if the Lortabs do a better job with pain management.
Peace,
Terri

tkoski

How odd, I just looked at my screen name Tkoski2, while that is a name I use, I usually pop up on this board as 5kids.. chemo brain probably had me type in an old screen plus password. Hope I didnt confuse anyone... the same ole other Terri with an i here.

sdstarfish

Hi, Everyone:
Back from Philly. Great trip overall, but that air pressure definitely does something wierd to the arm with the nodes out! Glad I had the sleeve.

My Dad's/brother's surprise party went well. They both thought it was for each other! My Mom was very proud of herself.
Starting tx #3 on 8/6, so I'm enjoying my days of eating like a pig while they last.

Tomorrow I will tell the onc's office that I am refusing Nuelasta. That should go over well!

Hey, has anyone's hair ever stopped falling out before they were bald? I basically just have peach fuzz left, but it would be cool if I kept it.

honeygirl

Hi everyone. A/C treatment is offically over!YEAH! My first question yesterday was "when will my hair grow back"! Hopefully , I should she some growth 2 weeks after the 21 day period that would have been another ac treatment. So , hopefully in about 5 weeks. Then she said it would depend on my own hairs growth rate. She said to maybe wait to have my arcrylic nailsdone for a couple of months. That my wbc was on the low side , even with the neulasta shots. I just feel so much more like the women I want to be with my nails and hair. I know it doesn't define me. But it sure makes me feel good about me!
Well , my onc said my lump is nothing. some kind of cyst. Hardly even there now. Which was great news. Thanks all for your thoughts and prayers. I talked to him somewhat about the tomoxifen. I guess my next appt. he will have more info and percentages for me. He said he doesn't see removing my ovaries as an option , unless something was wrong with them. And that my ins. probably won't pay to just have them removed. I just thought of it as a part of preventative medicine.
Pam , thanks for the suggestion for my gunkie eyes. I will deffinately try some.
Lisa , I just finished up tx #4 of chemo. I still have my eyelashes and brows. And I too have some peach fuzz. I think however , it is going to be coming in alot more grey than it was.
Dawn and Bonnie hurray for your last treatment of chemo.Yes we are killing the beast.
Debbie , sorry to hear the taxol is getting to you today. I hope it doesn't last to long. Yes , hoping we all see some hair growth soon.Ok ladies, getting tired. Gonna go lay down. Take care. Hugs and Prayers.Melody

dville

Hi, I'm boarding this ship a little late. I started AC on June 27 and have one more to go, then it's Taxol for 4dd tx. I am nervous about the Taxol and bone pain. The neulasta has given me some trouble, expecially the first shot. I have been reading other boards just to see what's ahead and lots of people recommend powdered L-glutamine to deal with the side effects of Taxol and Taxotere. Anybody else know anything about it? I have not shaved my head because I still have a fringe that looks OK with a big hat. I thought all the rest would come out with Taxol? I hate being baldish. I look just like an Orangatang and it is too hot here in Georgia to wear a wig except when I really need to so that I will not scare small children. My youngest, age 9, has been very brave about all of this, but even she tells me I look pretty strange. I guess it's a small price to pay if this stuff works. Debbie M.

burquie

Hi All!
Well, that's it for the "red devil" for me! Just got back, I couldn't even look at the stuff when she was putting it in.... made me very "gaggy" (is that a word?) But I just kept telling myself that this was the last time for this crap, and the Taxol is supposed to be better. Spoke with the new Dr and he asked me if I wanted DD taxol or every 3 weeks; I told him I wanted to go with the DD.... I want to get this over with. He said if for some reason it's too much we can take it to every 3 weeks. I told him I want to be done at the end of September, like I've been planning on. One of the nurses reassured me that the Taxol is much easier and I shouldn't have any problems. So there you have it..... I'm half way done with the chemo! Not sure about rads, as I fall into that "grey area" of tumor size and node involvement. I'll be meeting with the rad onc to discuss the percentages; if its not a significant diff in percentages I'll probably pass on the rads....... hmmmmmmm more decisions.
Hope everyone is feeling good, stay cool for those of you in the heatwaves!

Bonnie

mikeysmom

I had AC #3 yesterday. I felt so bad after--just ached all over and nauseous. I didn't throw up till today and just once. Today I'm just achy and exhausted but can't seem to get any rest. I'm also really tired of being bald. I just have a stubble but I still have my eyebrows and eyelashes although they are really thinned out. My friend brought Italian ice and homemade popsicles (melon flavored) so that was way better than the ice chips. Does taxol burn your mouth too?
Cyndi

TerryNY

Hi, ladies,....well #4 of the AC has come and gone and I'm so relieved that's over. I've been really tired and out of it this week. Just now getting my brain back and feeling semi-normal....and when will the tastebuds return???
I hope Taxol isn't as harsh on the GI tract and the dry eyes and mouth.

Bonnie, good luck with your decision on the rads. I had mammosite which is comparatively easier to do, but my rads are done.

Cyndi, homemade popsicles sound terrific. Watermelon has been a lifesaver for me the past few weeks. Enjoy!!

Lisa, welcome home, glad the party was a success! I too have peach fuzz. My hair started falling out after my second AC and my daughter clipped it very, very short but it has since started growing back, very odd! How did your onc take the news about your neulasta refusal?

Terri, sorry to hear the Taxol is dragging you down. Have you had success with any pain meds?

I have read that the L-glutamine is great for Taxol SE but I don't have a clue what it is.

Melody, great news on your cyst!! We don't need any more frights like that, for sure.

DebbieM, welcome to our group. There are several us starting Taxol soon and have the same concerns. Hopefully we can teach and support each other.

I hope DebbieK and Kathleen can check in soon with their Taxol updates.

Have a good weekend!

DebbieK

Hi All,

I am at day 5 of Taxol, and I hate to say it has not been easy. I am relieved to have no nausea or mouth sores, but Taxol hasn't been a walk in the park either. I have had significant joint and muscle pains pretty much since day 3. So bad I couldn't sleep through them that night. I finally dug out some oxycodone left over from surgery, and took two which helped me get some sleep. Yesterday I stayed home and took ibuprofen and oxycodone. Today I worked for half the day and alternated taking ibuprofen and tylenol. I slept for two hours this afternoon. Tonight I feel some better and am feeling neuropathy in my finger tips and feet. I hope to continue to feel better as the days go on, and I will be anxious to hear how the rest of you girls do and how you handle the SEs.

I am so looking forward to being done with all this chemo; it has overall been harder than I expected. Thanks for all the chatter and support. It is so nice to pop in and see how you all are doing each day.

Take care, Debbie

burquie

DebbieK and Terry,
I mentioned the L-Glutimine to my onc about taking it with the taxol. I've read on other posts that it seems to help with the joint and muscle pain and also any nail problems; he said he had heard that from some patients, and said it couldn't hurt to try it. He also mentioned taking some vitamin B6. so I'm gonna give them a try..... can't hurt, right??? I made a post (a question) about what doses of these others have taken ont the "Help me get through Treatment" section.
I hope we all breeze through the Taxol...we can do it girls: We're Strong!!!

Bonnie

sdstarfish

So glad to hear that so many of you are seeing the light at the end of the chemo tunnel!

(also glad to hear that I may keep some fuzz and eyelashes!)

Welcome, Debbie (level)!

kath11

Hi Everyone,

Just wanted to check in and see how everyone is doing. I have just been through my first week of Taxol. It has been a cake walk for me comapred to the AC. I am getting my treatments every week as opposed to the 2 or 3 week regimen, so I did hear that it may be easier as far as side effects. I have had no bone or joint pain. The only SE I've had was the diarrhea for a couple days and a little crampy stomach for a few more days. I am tired at the end of the day, but that fine with me. Yesterday I went out and played an hour of tennis with my daughter. We were pretty pathetic and I certainly wasn't going after any difficult balls, but it was so much fun and I felt like my old self. Of course, I do have 11 more weeks of this and as everyone says chemo is cumulative so we shall see how this progresses. But this first week was definitely the best I've had since June 4 when my chemo began.

Terry, my hair is growing back too! I don't know if it will fall out again or not, but right now I can even feel it through one of my baseball hats. The little spiky hairs go right on through the top! And my tastebuds are better than they were. They still aren't back to normal, but the horrible taste in my mouth is different now. Much more tolerable. Who knows if that will change as the weeks progress.

Good luck to everyone this week with their chemo and SE's. I can now see the light at the end of the tunnel and it appears to be getting brighter every day!

xoxo
Kathleen

kath11

Debbie K,

I hate to hear that you are having more side effects with the Taxol. I do think having a lesser dose every week is easier on me than getting it every two weeks. Originally I was supposed to get the 4 dd every two weeks. The down side of being changed to the weekly regimen for 12 weeks is my treatment gets extended four weeks! So I must say, I still wish I was able to be done sooner than later. Oh well. We will do whatever it takes. I hope your days get a little easier with time. Take care.

xoxo
Kathleen

garnetann

Hi all
Got through #3 AC. Got it last Thursday and finally feeling semi human today. My dr. told me my future. I am in an inbetween stage of stage 1 and stage 2. My lymph nodes are clean but the lymph channels showed extensive invasion. So he has told me I can have 2 extra of the AC or 4 of the taxol. I would rather have nothing at all, considering the nasty se of the AC, but I will do what he recommends. I am hearing the taxol is less nasty than the AC, but would you choose only 2 more of the AC or 4 of the taxol? He said we won't make a decision until my next treatment. It would be dd either way, than I start radiation. Oh, all my hair never fell out. I clipped it down to about 1/2 inch when it started coming out in handfulls and a bunch of little patches have stayed. Is that normal or will it fall out eventually anyway? So far, (knock on wood), my eyebrows and lashes are intact.

sdstarfish

Garnetann:
Congrats on finishing 4 of AC! Wish I could help you with the decison, but I am TC (start #3 tomorrow - yuck. A week of torture will follow.)

Question re: your radiation: if you don't mind me asking, did you have a lumpectomy or a mastectomy?

Question for all the ladies here: Have any of you had/will have a mastectomy? I am the only person I know who had chemo first - not to shrink a tumor, because I already had a lumpectomy - but my tumor is myofocal (microscopic pieces throughout the breast). It will be a bilateral, so once it's done, I'm not scheduled for radiation. I just wondered whether that was typical. Thanks.

shrink

Lots of us have had chemo first followed by mast. In my case, I've had chemo, I'll probably have a bi-lat (preventive) mast. followed by more chemo, followed by radiation and HRT. The goal for me is to shrink the tumor with chemo. The mast is necessary due to the multifocal nature of the beast. It's a long road but I'm Stage IIIB, Grade 3, 6 cm mass, positive nodes. ER+. PR-, Her2-.

"My life has a supurb cast. I'm just trying to figure out the plot." Ashleighbrialliant.com

garnetann

I had a lumpectomy and they took out 5 sentinal nodes as well.

burquie

I had a right mastectomy with immediate reconstruction and a reduction on the left. My tumor was 4 cm and I had 3 of 23 nodes positive; the Dr got good clean margins from the chest wall/muscle and The size of tumor and number of nodes is what puts me in the "grey area" for rads. I just don't know what there is possibly left to radiate???

Bonnie

lastminuteD

Hey everyone!

Last A/C Thursday the 2nd. Big relief that it's over - Friday was okay as usual, but spent most of Sat-Sun in bed and would prefer to be in bed today instead of at work!! Start weekly taxol/herceptin 8/24 - hoping to be able to report good news like Kathleen!!

I had a rb mastectomy with reconstruction and started tamoxifen last year when I was first diagnosed with a lift to the lb when I had my exchange surgery in July, nipple recon in October & tattoo in Jan w/touch up in Mar 07 right before I found the recurrence for which I'm getting 4 A/C, 12 Taxol/Herceptin, 6 1/2 weeks of rads and continue the Herceptin till June of next year. No node involvement, clean margins both times.............

Hope everyone has a good week..............
Dawn

Charlie451

Wow, I am always amazed by the variations in diagnoses and treatments in this crazy disease. The nice thing is that they can target treatment so well. I'm feeling good now that I'm on the upside of tx #3 of TC. The same side effects always occur but they are predictible and manageable. I have done a little research on longer lasting SEs of chemo - mainly bone loss. I'll try to paste in some links when I'm not babysitting grandson.
Have a good week.

Linda

sdstarfish

Shrink:
I love that quote!

Thanks everyone for the input. I am having a bilateral after this, one side preventive - although I may actually have the gene, which means there's an 85% chance of recurrence at some point anyway. Anyway, I'm hoping to avoid being told to do rads AFTER my implants. I hear that's a disaster.

GracieM2007

Ok, ladies...I have had the weirdest side effect I've ever heard of. I got a shot of procrit yesterday. Really didn't want it, because the side effects can be so nasty, but my hemoglobin was down to 9.

Last night, while cleaning up for bed, I wwas washing my hands, in warm water...it wasn't HOT, just warm. When I got done, I really looked down and my hands were purple..and I mean PURPLE all over with red splotches. The veins in my fingers were sticking out like they were swollen, and I could even see the veins in the tips of my fingers. It was like my hands didn't have any skin on them...REALLY weird. So I called my onc's office. the nurse said, if they are ok this morning, she can't see it's a side effect..it's just to strange that I've never had anything like this happen until AFTER I got the shot of procrit. She did say if it continued to happen, let them know...well, I haven't washed my hands in warm water, I'm scared to now...of COURSE it is going to happen again!!!!

Has anyone else ever had anytning like this, or heard of anything like this?

Gracie

TerryNY

Lisa, have you posted your question on the radiation discussion board? I'm sure the ladies there could give you info and share their stories. I had a lumpectomy with mammosite immediately after so I'm done with rads. I know my sister had radiation after her mast. but that was 14 years ago, I don't know if protocol has changed over the years.

Dawn, congrats on finishing AC!! Doesn't it feel wonderful to have that BEHIND us, I feel so good knowing it's over.

Gracie, I'm really surprised they didn't want to see you pronto with this, sure sounds like a SE to me but then again, I'm not an expert. The timing just seems more than coincidental. I hope you haven't had any more trouble.

I did something today that I have been looking into for awhile. I received a Reiki treatment! It went so well I signed up for three more sessions. I have never felt so serene and my head is more clear than it has been for months. Aaah..I can't wait for next week after my Taxol tx to see if it helps with any possible SE.

Hope everyone is having a good week so far. To those of us undergoing chemo this week, I'm thinking of you and sending you positive thoughts.

Charlie451

Gracie - if all you need to do is boost your red blood cells try eating spinach or apricots or even molasses (it is rich in iron). Do any thing to avoid another shot and such a strange and unnerving reaction.
Terry - reiki sounds very interesting. My daughter was telling me about it. Let us know how it works for you. I was thinking about a tai chi class but I'd have to commute so far. Is reiki offered through the Gilda's club?
Linda

TerryNY

LInda, I had a friend suggest a Reiki practioner in my area but there is a web site you can use to locate one near you. Are we allowed to post links?
The actual experience was wonderful but you do have to be open to this alternative/complementary treatment. I felt very relaxed and free from stress for the first time in months. I could actually feel the heat from the energy near my breast that had the cancer (I did not tell her beforehand which breast was affected). She also did my whole body starting at my head and working down to my feet. It was heavenly. To me, it was much more relaxing than a massage, mainly because you remain fully clothed! I'm not in the best of shape so I don't like body massages, they makes me feel self conscious.
Gilda's Club offers tai chi but since I'm still on restrictions I haven't been able to participate in those yet. I do plan on doing it once my infection wound heals. I'm not sure if they've had seminars on Reiki there or not.

dville

Hi, I had a mascectomy and am doing 4 AC and 4T and will do radiation after. I had 13 positive lymph nodes and the dr. says that's why I need the rad, in case there's anything else there in that area. In Susan Love's book, she talks about a case where breast cancer came back in the fatty tissue in the breast area even after a woman had a double mascectomy. Scarrrry! But all of this is and reoccurence in the breast area after masectomy is probably rare. (I hope!) Debbie M.