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TAXOL and side effects, stop chemo

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Candlelady View Drop Down
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    Posted: 16 Jul 2010 at 2:52pm

My mom had a mastectomy and was on her finished her first rounds of chemo (total four) then they started her on Taxol and she was having major problems with her hands and feet.  The doctor recommended this week to stop all chemo, it will run the quality of her life.  My mom is very upset that she has not completed your last two rounds that she did not do everything she could.  Anyone ever ran into this, any advice.  My mom is 70.

She had size 1, grade 3 not sure of stage since already had her lumps removed before. 
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vickid View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickid Quote  Post ReplyReply Direct Link To This Post Posted: 17 Jul 2010 at 8:41am
Taxol can be pretty mean and there are alot of people who have problems with it!
But first, let me give you a dubious welcome to this site...Really nice, informative people here. I don't post much...but wanted  you to know that you are in my thoughts.
 
I was able to complete all of my Taxol treatments, and I a deducing that, when you mention the first 4 treatments, that those were A/C ( Adrymicine and Cytoxin?). Somtimes a doctor will stop Taxol treatments, but I thought that the drug was replaced with another similar chemo drug....but it differs with so many. I think I am the only one who had surgery prior to beginning chemo-most with triple negative IBC start with chemo...we get quite an education here-and we didn't even want it.
 
I was told that neuropathy-problems/pain in hands and feet-will disappear with time-didn't happen with me, yet, anyway and I finished chemo in November 2009. There are many who battle it.
I learned early from my chemo nurses that everyone is different in dealing with treatment - frustrating but true. I still have the hand and foot problems. My fingernails hurt ( how dumb is that!) toenails still look like hell...and I had a bloody nose daily, of course the mouth sores...looked like Uncle Fester and felt just about that pretty....the only time I was envious of women who wore burquas....but it's slowly coming together...but it will never be the same.
 
I hope your mom has faith in her doctors, and I sincnerely hope that she voices and questions her concerns. Years ago I made  up my mind that, though doctors are well edcucated and hopefully well-versed in their field, we are paying their salary they are ( no disrespect) the hired help....and I feel like a hypocondriac (?) with all my questions....and I pay the bill.
 
Your mom is lucky to have you! Be strong for her and hear the advice given to her, but dont forget to cry with her too.
 
Vicki/Venice FL 
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: 17 Jul 2010 at 11:58am
Hi Candlelady and Vicki,

Vicki, there are many of us here who had surgery before chem. I had my surgery prior to receiving chemo. I had my left breast removed and an axillary dissection. I then took adriamician and cytoxin for 4 treatments and taxol and gymzar for 4 treatments. I did experience quite severe neuropothy with the taxol but with my doctors blessing I continued with all 4 treatments. I am 4 years since diagnosis and the neuropothy over time has become less of an issue. I have heard of people being switched to taxotere in place of the taxol. Not sure how much better that is. If I were you I would inquire.

I was 65 at the time of my treatments and am 69 now. Good luch candlelady and your mom.

Love in Christ,
Lillie

Dx 6/06 age 65,IDC-TNBC
ST-IIb,GR3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 08/2013 NED
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vickid View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickid Quote  Post ReplyReply Direct Link To This Post Posted: 17 Jul 2010 at 3:22pm
Lillie...
I sounded really stupid with that remark-like I think I am the only one on this earth who had surgery first!!! I meant that I knew of no one else who was treated in that order-but now I know you!
 
Do you know of any specific reason for your treatment being done in that order? I was never advised...just curious.
Blessings,
Vicki
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: 17 Jul 2010 at 3:53pm
Candlelady,
I wasn't able to finish my last 5 of 12 weekly chemo treatments because I had major surgery and was off chemo too long to have any benefit to finishing the last few.  It bothered me quite a bit, too, at first, but that has greatly lessened over time since January 2010.  My oncologist reminded me that I'd had the vast majority of the chemo plus the mastectomy already.   I hope this fear will lessen in your Mom, too.  I'm 65, co nearly as old as your Mom.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: 17 Jul 2010 at 4:06pm
Dear Candlelady,
It sounds like Lee's experience with not finishing treatments sort of parallel's your mother. Lee was getting her taxol in 12 weekly doses and your mom was getting hers in 4 bi-weekly doses. Lee got 5 infusions (almost half) and your mom got 2 infusions (exactly half). There are others on this site you could not finish treatment for various reasons, so your mom will probably do fine. Keep us posted.

Love in Christ,
Lillie
Dx 6/06 age 65,IDC-TNBC
ST-IIb,GR3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 08/2013 NED
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: 17 Jul 2010 at 4:45pm
Hi Vicki,

My cancer story went: found lump on regular scheduled mammogram, did ultrasound (right then and there) to see if lump was solid or maybe a cyst. It was a solid mass so I was set up with an appointment for a bioposy with a surgeon. Bioposy came back "cancer". The surgeon explained that I needed some scans to determine the size of the lump and to see if there was involvement anywhere else besides in the breast. It was not found anywhere else, thank God.

The lump was about 2cm so the surgeon said I could have surgery first and then go from there. I chose to have a mastectomy. A few days later I had a left mastectomy with sentinel node bioposy because nothing showed up in the lymph nodes on the scan. About 5 days after surgery, extensive testing had been done on the 3 nodes that were removed. The verdict was that 1 of the nodes had microscopic cancer cells, so my surgeon told me I needed to have another surgery to remove more lymph nodes "just to be on the safe side". I was not a happy camper.... He sent me to meet with the oncologist to see if I would need a port for chemo. He wanted to put the port in during the second surgery, if I needed one. My oncologist staged my cancer at IIb (2cm tumor + 1 positive lymph node + and TRIPLE NEGATIVE equalled Stage IIb.) A few days later I had 9 more lymph nodes removed and a port put in. All of those nodes were clear.

After a healing period of a few weeks and consulting with the oncologist he recommended very agressive treatment for a very agressive cancer. I asked him about the follow-up drug that I would have to take. (All my friends who had breast cancer were taking tamaxofin or something.) He explained that it was triple negative... there would be no tamaxofin or herceptin type drug after the chemo. He told me, "chemo is all you have"..... My oncologist told me that had the lump been larger the surgeon would have sent me for treatment before surgery.

I am telling this as it unfolded in my life. I didn't know all the protocols ahead of time. I just went with the recommendation of the doctors. In hind site the only thing I might have done differently would be have chemo first to see if it eradicated all the cancer cells before surgery, but I am now four years away from diagnosis, so maybe things were done in the correct order.

I hope this helps.... A lot of us do not know any of the answers ahead of time, we just do the best we can and PRAY..

Love in Christ,
Lillie
Dx 6/06 age 65,IDC-TNBC
ST-IIb,GR3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 08/2013 NED
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vickid View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickid Quote  Post ReplyReply Direct Link To This Post Posted: 18 Jul 2010 at 8:49am
Hi Lillie!
 
I guess I thought you had Inflammatory BC as I did-the normal treatment is chemo first because there is no defined tumor as it grows in sheets....trauma is trauma and we have certainly had a fair share. I guess that, of all things that can happen, we hope that cancer is not one of them, but it's amazing that so many must fight it....I commend  you on  your memory! I think I was lead through alot of my experiences, unable to think as clearly as you did.....
 
Vicki
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: 18 Jul 2010 at 12:12pm
Hi Candlelady, what an amazing daughter you are to seek information for your mother.  She is lucky to have you beside her.
 
I was wondering since she is really worried about it, would a second opinion be something to consider?
 
I was diagnosed twice at age  56 and 60, now 3 years out from last treatment. I did have Neuropathy with the Taxol and Taxotere.  I began using Neurontin and it has helped me alot.  The dosage would have to be possibly changed according to each patient.  Starting Neurontin you feel a little strange but your system gets used to it quickly and I don't notice anything except when I forget a pill!
 
Has she considered seeing a Certified Genetic Counselor to test for a brca 1/2 mutation?
 
This could be valuable information for her and her children.  I tested positive at age 60, both my daughters tested and have my brca 1 mutation.
 
 
If you could share a little more about her specific pathology?  Do you have a copy?  It is a good idea to get copies of pathology reports, scans, etc., while going thru this so that the patient has a record at home that they can browse thru and may find questions or even sometimes the occasional error or lack of info is found!
 
Best wishes to your mother, she is certainly having a hard time but with patience, which is hard to gather up occasionally, it will get better.
 
Keep us updated on how she is doing.
 
 


Edited by trip2 - 18 Jul 2010 at 12:15pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: 18 Jul 2010 at 3:07pm
Hi Vicki,

Believe me, if I had not done some journaling during the course of my surgery and treatments, I couldn't be so factual either. I had chemo brain all through my treatments and still have "word recall" issues at times which I contribute to chemo. I am not about to contribute it to my age. Ha Ha.....
I met three ladies who have inflammatory breast cancer, during the past year while volunteering at the oncology clinic. All three had treatment before any surgery was done. None of them are triple negative. Two are now on tamaxofin and one is doing herceptin. All three seem to be doing very well.
As you said, I felt "led" through most of my cancer experience, but thank God I had doctors that I trusted and felt confortable with the advise they gave me. That makes a huge difference. Also I have a few friends who have had breast cancer prior to mine and I learned a lot from them. But none of them are triple negative and I don't even discuss it with them because "they don't get it"...
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
ST-IIb,GR3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 08/2013 NED
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Candlelady View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Candlelady Quote  Post ReplyReply Direct Link To This Post Posted: 21 Jul 2010 at 10:50am
Thank you for all your responses.  Unfortunately when I posted I wrote should have four treatments she actually had six the last two Taxol.  Yes I do have all her pathology reports, went to every doctors appointment, and have a log of things that happened during chemo.  My mom is worried because she feels she did not complete her treatment.  The doctor felt that it could alter  the quality of her life if she continued with Taxol.  She is seeing the onco. doctor in five weeks. 
 
They originally though she had the zero stage breast cancer once the surgeon went in, she found a more aggressive type cancer, which I learned on more own that it was triple negative which is really scary!!!  My mom had breast cancer 20 years ago and was cured!!!!    She did not have triple negative then so they doctors are sure this is a new breast cancer dx in January 2010.  I have agreed and support everything and ever test they have done (they have been very thorough) so far.  I may suggest to my mom that she get a second opinion because she is so head strong that she wanted to do everything she can to fight this.  I am at work so I will post more about pathology report later. 
 
Thanks everyones input/advice.  I really appreciate it!!!
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: 21 Jul 2010 at 1:03pm
Hi Candlelady,

Can you give some examples of how altered your mothers quality of life had become.

Was it: buttoning garments, putting on jewelry, picking up things (especially from flat surfaces), lack of feeling in feet, inability to walk well, etc; or had it gone way beyond that? Was she in fear of falling?

I had some rather extreme numbness in hands and feet, but was determined to see the treatments to the end with the blessing of my oncologist. I was 65 at the time I took treatments. I will never be 100% ever, but most of my feelings and abilities have been restored.

Could you elaborate on just how bad her symptoms were.

God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
ST-IIb,GR3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 08/2013 NED
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Candlelady View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Candlelady Quote  Post ReplyReply Direct Link To This Post Posted: 21 Jul 2010 at 1:12pm

In response to Lillie's reply, having trouble buttoning garments, putting on jewelry, picking up things, opening coke cans, dropping things, lack of feeling in her feet.  She is walking ok now.  Her dr. told her it would get worse if she continued treatments and she feels now she has a very good chance of it going away.

 

 

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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: 21 Jul 2010 at 2:01pm
Hi Candlelady,
The sentence below is copied from your post to me.

"Having trouble buttoning garments, putting on jewelry, picking up things, opening coke cans, dropping things, lack of feeling in her feet."

I identify "totally" with all of these symptoms. It sounds as though you described me. These functions still do not come normally as they did before chemo, but I can button, hook jewelry, pick up things, open a coke can, I don't drop everything like I once did and I still have trouble turning pages in a book. My feet feel numbish at night after I lay down and are not always the best when I first get up in the morning.

Does your mother live alone? My husband was able to fill in a lot of gaps for me, ie hook my necklace, button my blouse, etc.

Do you think, from what her oncologist says, that not having all the treatments is life threatening? Do you feel your mother is suffering mentally from not getting the treatments.

Sometimes you have to weigh and balance; and it's not easy.

Good luck with your decisions and I wish your mother years of health and happiness. I am 69, so I identify a lot with your mother.

Love in Christ,
Lillie


Dx 6/06 age 65,IDC-TNBC
ST-IIb,GR3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 08/2013 NED
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