June 2007 Chemo

Kathleen, I had 12 nodes removed and hope I don't have a problem but who knows.  I believe you do have to get fitted for a sleeve, and I thought you also have a glove to keep fluid from accumulating in your hand.  It is a hard decision when you get conflicting advice.  Did you talk to your onc. about it?

I worry about additional damage to my remaining lymph nodes that could occur in radiation.  I am just taking it one day at a time.

Let us know what you decide. 

Take care,

Welcome bgcrutcher!  This website is a wealth of information and the ladies (and men!) are wonderful.

Kathleen - I've had that weird feeling too - nurse warned me when she "pushed" the decadron when I got them to cut it in half that it might happen if she was going even a little too fast for me - very weird!!  She said that one of her older (in her 80's) patients enjoyed it!!  Most she'd felt down there in years!!  This past week a different nurse dripped it instead and since it was slower I escaped that feeling!!! 

Italy?  How wonderful!!  I'm with Cyndi - I'm jealous!!

Hope everyone is having a good week!

Dawn

Kathleen,

Woohoo! Rome! Aren't you lucky! As far as air travel I haven't a clue about the sleeve for lympedema. I've read that there are some alternatives -loose fitting clothing and I don't remember what else. Big help I am. Overseas is a long flight so it bears some research about proper care of the affected arm.

That is funny about the 80 year old woman with the sensation "down there".

DebbieM - it is great to be finished. Congrats! I will be on almost the same rad schedule as you. Should be done before Christmas. My onc broached the subject of tamofloxin after rads but I am triple negative for hormaone receptors. I am postmenopause and have only one good ovary and it isn't doing anything I am aware of. So I don't know what good tamofloxin would do for me.

Linda

Just checking in.  I got the results of my scans and everything is good, MUGA, CAT and bone, all clear.

My tumor markers are elevated though, which can be caused by the chemo, so they won't remove the port yet.  I am NOT a happy camper.   They'll retest it again at my appt on the 25th. I was really hoping to have this all done before we left on our vacation the 1st and it doesn't seem like it's going to happen.  I'm highly disappointed, I just want it out!!

DebbieM, another at the finish line, congratulations!!   I can't help you with rads and tamofixin since I'm ER neg and have decided against hormone treatment.  (my tumor was slightly PR pos).  

As for flying and wearing of the sleeve, I've heard so many conflicting opinions on this but most agree, the longer the flight, the  more precautions you should take.  I think I'm going to buy one for now and see how it goes.  My flights to Florida should be short enough in length that it won't be a concern but I'll have it just-in-case.  

Dawn, too funny about the elderly patient.  I swear I felt a buzzing the last Taxol that was such an odd sensation!  I'm thinking it was some weird neuropathy thing going on but I'm glad it stopped, it felt so odd!

Well, I guess me and my port will go watch some TV and relax some before bed.

Hope everyone is having a good week!

Terry, I'm so glad your scans were clear. And so sorry about your port not coming out yet...I hate mine too.

Yes, I have pain medication but it's only making it a little better. And when it wears off in the middle of the night, I wake up. But I'm getting better each day. I think when the UTI is gone I'll feel better. Also, I'm really congested and it's possible I have a cold. I don't really feel like I do except for the stuffy nose though. And my sinuses are really dry too. Anyone else get that during chemo?

Cyndi

Am I the only one that didn't have any weird sensations with Taxol? Shrink, I won't finish until Nov. 17 so you won't be last...I think I have that "honor"...

Cyndi

Hello All!

I haven't posted in a bit, but I have been reading everyone's posts.

Debbie M: Congrats on making it to the finish line! Feels good doesn't it?

Terry: Glad the scans are clear! Has fall weather finally started in the Buffalo area? We have cooled down a bit here in Roch.

Cyndi: Sorry about the pain you're having, I too didn't have any weird feeling with the Taxol.

I have been feeling okay, a little tired at times..... gotta love those afternoon naps! I have been having to go and get my coumadin levels checked a couple times a week; still trying to get me on an even level with that. I think the vein in my "good arm" is gonna wear out if they don't get it soon. For some reason they don't want the lab getting it through the port. I go next week for my 3 week checkup (sooo nice not having to go for treatment this week ); I also see the rad onc and have a CT scan.

Hope everyone is feeling okay.

Bonnie

Hi Ladies,

I've been keeping up on everyone and their progress... I am so glad that so many of us are now done with the Chemo part. 

I had my last Taxol on August 29th.  I had partial breast radiation, two times a day for 5 days before I started my chemo, so I am really done!  My hair as finally started to peek out from under my scalp, and I actually was able to run for a whole mile without walking yesterday.  Everything sounds great but guess what?!!!  I feel sad... I want so badly to be back to me, you know what I mean.  I still look like I have cancer, People still give me the pitty look, I still have to take naps, my house is in such need of a good cleaning, and I feel so guilty about having this sadness!  The stuff that used to come so naturally for me is now an effort... Happy go lucky is a distant memory....  Don't get me wrong, I do experience good days, but I just seem to worry about life stuff more, and have to work harder at being the happy woman I used to be.  Ok, I know this is probably normal, I just had to write it and share it with women who get it.  I am grateful to have a place where I can share my down side... God knows most people only see my up side.....  Thanks for letting me vent, and I know it is all in the journey...  I will get to where I want to be eventually.

Peace,

Terri

Bonnie, yes, fall has finally arrived here.  In fact, I turned the heat on before I went to bed last night, it's quite cold out this morning! 

Gracie, congrats on finishing and getting clear scans, wooohooo!   Good luck on the AIs. 

Terri, there is a great article on the JohnsHopkins site about the emotional aspects of having cancer: 

http://www.hopkinsbreastcenter.org/library/diagnosis_treatment/post_treatment.shtml

It was posted elsewhere on the discussion board and it has helped me to know that what I'm feeling is normal.   I even sent the link to my family so they'll know what to expect in the months and years ahead.   I wish you well in this part of your journey.  Congrats on being done with the medical component of cancer!

GarnetAnn, good luck with your rads.   I, too, believe humor has a place in treatment.  It has helped me through many a rough spot over the past few months.  

Wishing everyone a great day!

Hi all,

Looks like everyone is doing pretty good and that is nice to hear. I'm not doing too bad myself.  I had my 5th Taxol weekly treatment and now I have 7 to go!  I'm getting excited about that but for some reason I have some sort of anxiety about it as well.  It is like I'm scared and I'm not sure why.  I have been reading about the tatoos and rads.  I'm having rads I believe after I am done with chemo so I don't really know much about rads right now.  What are the tatoos you are all talking about?  Are they permanent tatoos or what?  Sorry, I just don't understand.

Cyndi - I haven't had any weird sensations with Taxol either.  The only thing I was experiencing was alot of anxiety right after the infusion for only that day.  However, today I got my 5th treatment and I took a xanax as a pre-med and I felt fine when I got home, tired and sleepy from the Xanax and Benadryl combo - but at least I wasn't feeling like I was going through the roof.  I also do have some joint pain in my knees and below my knees.  Not that bad, just a bit uncomfortable.

Terry and Gracie - Congratulations on clear scans! I can only imagine how excited you are.

Terry - Sorry that they won't take the port out yet.  I know how you feel.  I unfortunately, have nine months of herceptin after I am done with my Taxol, so I don't see the light at the end of the tunnel for my port quite yet. You mentioned you had mammostie radiation after your lumpectomy. The wound that isn't healed is the one from the lumpectomy?  If so, I'm sorry to hear that.  I had my surgery on May 24th and it isn't until about 2 or 3 weeks ago that my breast is touchable without pain.  Maybe now that you are off chemo your wound will heal a little quicker now.

Debbie K - I am too impatient with hair growth and I still have 7 more weeks of Taxol to go.  My hair is starting to come in more,...but really really slow   I want more hair NOW.

Garentann - Are you sleeping any better? I too am not sleeping well. I wake up many times during the night due to mild hot flashes.  I am able most of the time to get back to sleep, but not all the time.  This makes for not getting a good nights sleep.  I have ambien and I take it when I really need a good night sleep after not having one for several days.  However, Ambien makes me have the most distrubing awful dreams that I wonder if it is really worth taking.  I may have to ask for something else.

Gracie - that is exactly what I had after my Taxol - restless body syndrome - you hit the nail on the head with that. That is why I got the xanax as a pre-med and it did work. They couldn't or didn't want to cut my benadryl or steroid dose as they are giving me the smallest possible dose already.  You also sound like me, get cold then hot, get cold then hot...what a vicious cycle

Shrink - I think that is what I have too with the eyebrow hair growth - a hair or two are pretty wild when they come in. At least it looks like they are coming in but I still have a long way to go.

Dawn - That was too funny about the five o'clock shadow - i think I have the same thing going on my head - grow hair grow!

Kathleen - you cracked me up!  The bugs running wild around your crotch! How hilarious. I can't say that i have had that feeling. hmmmmm....has that happened again?

Time to catch some zzzzs...

Denise

Wow, this has been a very quiet place the past few days. Got my port out yesterday. Today am just having some soreness, Tylenol is enough for that. Painted this weekend on the house, over did it, I had some swelling under my arm, it still feels like there's a baseball there. Am waiting to hear back from onc's office. I hope I didn't start lymphedema..that would suck.



Hope this finds everybody safe and well today.



Blessings,



Gracie

GarnetAnn, hope the night sweats are completely gone by now.  Are you done with chemo yet?

Gracie, I am JEALOUS about your port removal, how exciting for you though!!   Can you explain how it was done?   Did you get twilight sleep or just a local or what?  In the office or hospital?  I hope you don't have lymphedema.  Did you hear back from your onc's office yet?  Hopefully you just overdid it. 

Kathleen, congrats on your last treatment today, wooohooo, we are counting down our Junies.   My area has a dragon boat team and I'm joining as soon as my doctor okays it.   They meet once a week for an exercise program and then race during the summer.   Their name is "Hope Chest" and some of the women in my support group belong on the team.   They have an awesome video on their site if you're interested, I can link it. 

They were supposed to have a special program telecast last night on our local PBS station but we have satellite so don't get the channel!  I didn't realize it until it was too late.  :-/

I also consulted with a lymphedema specialist because I was afraid of flying w/o a sleeve.   But, she said that is a concern only if the flight is 4 hours or longer OR you already have lymphedema.  She gave me a bunch of exercises to do and tips to follow to help keep it at bay. 

I am freezing here in western NY and it's only October!  I think my internal temperature gauge has been fiddled with by the chemo.   I never used to get so cold before! 

Hope everyone is having a great week! 

Kathleen, thanks so much, I hope it's just some overuse.



Terry, the port removal was done in the surgeons office, with a local. Wasn't bad. I took some painkillers last night after the local finally wore off. Back to tylenol today, and it's not bad at all, just sore. I have to go into the onc's office tomorrow and have the PA look at my arm and the swelling. She wants to actually see it before she decides anything. They might want to do an ultrasound of the area. So I'll let you know tomorrow.



I won't have rads, becuase I have Lupus, so the chemo was the only option I had.



Debbie M., my PET scan was clean, I'm hoping and praying you are going to tell us yours was too



Keeping all of you in my prayers.

Hello Everyone, so nice to see all the posts tonight.  Gracie, I painted this weekend too.  Boy, I could not believe how tired it made me, and my head was dripping with sweat the whole time.  I was just painting our hall, but it felt like a lot more than that.  Guess I am still not quite up to par.  Sure hope your arm is ok.  I know it's a worry.

I am seeing the radiologist on Thursday to get set up for rads.  I waited a little longer, like 5 weeks, because I had two weeks of travel that I could not avoid for work.  Also, I just wanted to be free of the cancer center for a while.  Hopefully it doesn't make a lot of difference.  Since I had a mastectomy, I am not even positive that the rads are totally necessary.

Terry, it is getting cold here too, and I am wondering how I will stand it when my hair is long enough to go without my headcovers.  After roasting all summer, I suppose it will just be my luck to freeze this winter! 

Hope you are all good tonight.  Take care!

Hi,

I have my last taxol tommorow morning. I will be glad to put it behind me.  And no neulasta shot this time either.  I can see how the SE catch up with you.  I am still tingling and itching from the last one.  Not enough to get me down, just an annoyance. I put 1% hydrocortosone cream on my hands and that takes away the itching.  The feet are just there, kinda tingly and numb, worse at night after being on my feet and I did aerobics yesterday too.  I thought I would die, but refused to quit. 

I am hoping it all goes away in a month or so.  I start radiation on November 1st and should be through by the middle of december or so.  They said the side effects are not nearly as bad (fatigue atleast) for younger women.  They see a lot of fatigue if you are over 60.  He said I will do fine, can drive myself and continuing working full time.  Which is good because I am running out of necessary leave with the chemo treatments and I don't get anymore time until the end of May.