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An update...failed 1st TC chemo ...

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arabella View Drop Down
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    Posted: Mar 17 2013 at 2:40pm
Hi Everyone!

Everyone on these forums have been so kind and helpful to me and I wanted to post an update on where I am.
I had my first chemo on Tuesday, March 5, 2013.  Everything went really great.  I followed the great advice I received on here......two of the most important being hydrate, hydrate, hydrate the day before chemo, during chemo and thereafter; and the other was staying ahead of the nausea with the anti-nausea meds.  I never suffered nausea TG!.
The day after chemo, I walked 3 miles and really felt pretty good but mid-morning felt that my lungs became very congested in one single moment....really got my attention.  I continued to become more and congested.  Even saw my surgeon that afternoon for a regular check-up and mentioned to him my congestion and he said that wasn't from chemo....that the effects of chemo wouldn't happen that quickly, so......I thought, well.....I guess.....if you say so, but seems weird to me.
By the next morning, I call Cancer Center for help with congestion and to tell them about this.  I was told to take Tussin and Metamucix.  I lost all sense of taste and smell.  But all in all, I was still doing okay.....not nauseous ....not tired.....none of the SEs I was expecting from chemo, but only  this severe congestion.
By the next morning, I have what I think is a yeast infection and called in about this and they called in a script for me.  I noticed a paper like cut on middle knuckle of left hand and thought that just seemed weird.  My left side is where I had my ALND and I'm super aware of anything on left side of body.  They told me to put Neosporin on it.  I also mentioned that I had a couple of bumps on my neck which seemed odd.  They asked if they itched and I said no and they said lots of people blame everything on chemo....just keep an eye on it.
Well, after that, everything went downhill.  Over the next three days I broke out in a terrible rash...similar to poison ivy/hives all around my neck into chest area, on both sides of body in same places, hip area, buttocks, back of legs, tops of hands and it itched so badly I can't describe it.  The yeast infection I thought I had was not that at all, it was this horrible rash.  On my forehead were little red slash marks, cuts on sides of lips.  I was MISERABLE.
Finally, at the clinic which is an hour and a half from where I live, on March 12 (one week after chemo given),  they saw me.  I was having a severe reaction to the Taxotere and Cytoxan chemo.  My WBC had been 4.6 and was now .06.  My chest was heavily congested and if chest x-ray showed pneumonia they would put me in a hospital and not let me come home, but fortunately, I did not have pneumonia.  I was given super antibiotics and steroids in IV immediately upon arriving.  Also, an ultra sound was done of ALNC and lumpectomy because I could feel it swollen.  I was given scripts for at home oral Steroid ZPak and antibiotics.  I went back every day for four days for shot of Neupogan ( sp.????the shot instead of Neulasta) to bring up WBC.  My onc said that the TC chemo is over for me.
Today is March 17th and my ears have just cleared for the first time in many days TG!  I can taste a little better.   I am still congested, but much better.  My rash is unbelievably better.  Steroids seem to work magic.  I walked a mile yesterday and have been walking a bit every day.  All in all, I feel great now!  Only now, do I really realize how badly this affected me.  I go back to see onc this coming Wed. to talk about where we go from here.
I write all this in detail to help someone else who may be going thru what I did.  And also to let all those who were so kind on here to help me to know what has been happening with me.
Wishing all a Happy St. Patty's Day today!

Kaye  Smile
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 3:27pm
Kaye,

Oh my that is horrible for you!  You definitely have had the worst side effects I've heard about.  The rash was most likely caused form the Taxotere.  I had the breakout during my 3rd treatment and it was horrible.  The rash/hives/itching all over with no relief until my onc prescribed prednisone.  I was worried it would happen with tx #4, but it didn't.  

Glad your feeling better and on the mend.  Let us know what your onc tells you on Wednesday.

DOnna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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beck View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 3:28pm
OH MY YOU HAVE BEEN THREW IT , I THINKING THEY WILL TRY SOMETHING ELSE , I HOPE , I DID CMF CHEMO IT SURPOSE TO BE EASIER , IT WASNT FOR ME BUT IS FOR MOST I KEPT MY WHITE BLOOD COUNT WAY LOW , BUT I FINISHED IT , BUT WHAT YOU WENT THREW WOW SCARY   BECK
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 4:42pm
Kaye
I am so very sorry to hear about your ordeal with TC.  These chemo drugs are dangerous and it is hard to prepare for all possible SEs. I wish they had seen you earlier and treated you accordingly. You are very lucky (I know it doesn't sound much like luck) not to have developed any serious infection which could be life threatening.  I never had Taxotere but did have Taxol and was warned about the hypersensitive reactions one can get.  I was extremely anxious the first 2 times but never got any symptoms, yet I experienced flushing and chest congestion within 10 min of my 3rd infusion.  It is very hard to know who will experience what and when.  I hope that once you have recovered sufficiently, your doctor will recommend another chemo regimen.  One learns from experience and frequently we, patients, aren't insistent enough even when we know clearly something is wrong because we don't want to "cry wolf" and because we don't know what to expect. Thinking back I knew so little when I was first diagnosed.
I am very glad you are recovering -- Neupogen should take care of the low WBC. Neupogen is similar to Neulasta except it doesn't last as long, hence the more frequent injections.
Thank you for keeping us updated with your progress.
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 5:55pm
    

        Hi Kaye,   I have been thinking about you and so glad to hear from you except for all that has happened, I am so sorry. That is too bad. I was shocked to hear you were walking that much. Please try and go easy on yourself if you do not mind me saying.   You have a lot ahead of yourself and your energy needs to be conserved so that you can manage whatever chemo they will give you...Just my opinion, hope you do not mind the concern...Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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beck View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 6:52pm
YES TAKE IT EASY YOU CAN EXERCISE LATER, JUST A NICE LITTLE STROLL IS FINE, BUT DONT OVERDO IT, I WENT WALKING WHEN I WAS DOING CHEMO , FELL AND BROKE MY FROUNT TOOTH, BUT THATS ME I TEND TO HAVE THINGS LIKE THAT HAPPEN TO ME   BECK
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 9:56pm
Thanks for all the kind comments and helpful advice.  

Annie, I don't mind your saying that at all.  I appreciate your concern.  I'm a walker and routinely walk,  but the reason I was so dedicated to walking even after going thru all these SEs is that my onc told me before chemo began that one of the keys to my getting thru this chemo successfully was exercise so I thought I was doing something good.  On Friday, the day of my last Neupogen shot, the nurse did tell me to take it easy.  I have been so wired from all the steroids till I just about couldn't sit still.  Last night was the first night in a long time that I actually got over an hour's sleep at a time.  Because of all the coughing and steroids, I've been having to  sit up all night.  I didn't walk today at all and will slow down.  

My ALND is tight and feels swollen.  This happened about 4 days after chemo treatment.  They did an ultrasound of armpit and lumpectomy and doctor said he saw edema/fluid....what I was talking about....that this could be caused by the chemo.  He didn't see any defined forms but wanted to keep an eye on it so another ultrasound in three months.  Did any of you have any kind of swelling in lymph node area from chemo?   I thought maybe it was my body trying to fight off possible infection from having gone haywire.  My fingers are a bit swollen as well.  Maybe I'm just full of fluid.  I'm still trying to stay hydrated.

Oh, Beck....I'm klutzy and hope I don't fall.  I'll try and be extra careful.  Sorry you had that happen.

Kaye  
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 18 2013 at 1:56am
Kaye,

So sorry to hear all you have been thru.....after the chemo infusion that seemed to have gone so well....
    but then afterwards.........
Glad you followed up with your care providers and keep them informed.....and were finally seen.
Was happy to read your "All in all, I feel great now! "

You mentioned an ultrasound of the armpit was done and the doctor said that could be caused by the
chemo.   Considering what you have been thru, do not want to assume that your surgeon also knows
about the fluid/edema in the armpit.   If your surgeon has not examined your armpit, please consider
an appt for your surgeon to see it.    Sometimes, one says.....call and speak to your physician.   In this
case, the more prudent action might be a visit. Hopefully, the surgeon will also say....monitor it.
The other thing to mention and have looked at....is the swelling in your fingers.   Again, hoping everything
just needs a little more time.   Would suggest you consider asking specifically to your providers: is the
swelling a delayed post surgical response........do I have any signs that I may need a lymphedema
prevention program by a lymphedema specialist   (or a PT or OT with specialized lymphedema training
who treats a lot of post breast surgery patients)? ......and mention that cut on your knuckle and cuts on
side of your lips with the recent wbc of 0.6.       Some people have swelling when on steroids and
you may just need more time BUT asking about a lymphedema prevention program in the setting with
recent surgery and a drug reaction with swelling certainly sounds reasonable.

And do hope you can get a good night's sleep.


With caring and positive thoughts,
Grateful for today............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Mar 18 2013 at 6:00am
Hi, Kaye,
I'm so sorry to hear how awful your experience with TC was and I hope that you continue to feel better and better!  I had certainly been thinking about you and hoping that all was going well.  I wish you many, many healthy days ahead.
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 19 2013 at 11:48pm
Kaye,

Hoping each day you are feeling better.....and less congestion and your white count coming back up.
Hope you are finally able to get a good nite's sleep.

Just wanted to send some caring and positive and good thoughts your way for your Wednesday
appointment to sort things out and re-look at your treatment plan with your oncologist........
with the plan to include what to do about the armpit and finger swelling if still present.
And ? maybe some input from the TNBC oncologist you consulted with at UAB.


With good and positive thoughts,
Grateful for today.............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2013 at 9:59am
Thank you so much, Judy!  My swelling seems to be better....apparently a SE to Taxotere can be fluids filling up in body.......time will tell.

I posted new thread for my latest update:


Again, thanks for all your kindness to me....and hope you are doing fine.....Heart
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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