Coping with Cancer

anji

I was diagnosed 4/12/07 with Stage II breast cancer, had a lumpectomy(partial left mastectomy; lymphs, lungs,liver and bones are clear) on 5/1 and began chemo on 5/25. I completed 4 rounds of A/C and began Taxol on 8/24. Taxol has caused tremendous bone & joint pain as well as numbness & tingling in my fingers and feet. I had my 2nd Taxol treatment on 9/14 at that time my oncologist informed me that he may discontinue the Taxol because of the side effects because they increase with treatments. I will find out out on 10/5 if chemo is finished. I will be having radiation in a few months after having a 2nd surgery to clean the margin where the lump was excised. I have never experienced pain & discomfort like I have this past week. At times my legs feel so heavy & tender that I have difficulty walking; as if I'm 75 instead of 55. I can't take much more. I'm working Full Time, this week has been the most uncomfortable by far. Any advice will be greatly appreciated.

babs49242

I feel for ya, anji! I had the same effects. I had the priviledge of not working. That didn't make it easier. I did take an anti-inflammatory it did relieve SOME joint pain,at least I could walk,gingerly. If you can tough it out think of it as KILLIN' the yucky cells that invaded your body!
Cindie

seof

I was diagnosed a month after you...just chemo so far...most likely mastectomy in Dec. Chemo is working well in the meantime. I'm working full time too...side effects are not as intense, but I do get tired and have trouble staying focused. I have adapted my environment so there is less walking, and I have a "buddy" who helps me make a daily to do list and checks up on me to be sure I am doing it. I don't know your workplace, but maybe you could trade jobs with someone who has a less active position for a while? Maybe contact American Cancer society, or ask your chemo Nurses for a place to get an electronic scooter temporarily? It sometimes helps to remind myself that this is temporary... and it definitely beats what could happen without the chemo.

keep on keepin' on...seof

Skybuf

anji, I too took AC then Taxol, you can read my reports on it. The Oncologist highly recommended it for me due to so many malignant lymph nodes and the type of tumour I had. The Taxol did damage to my feet too, and still does. I started chemo Feb 06 and ended July 06, my feet are still like walking on broken glass and still I have no energy I know what your talking about. It's an individual thing if you keep taking it or not. I didn't have a choice but we are all different, my prayers are with you. Also the dr might just reduce the amount of Taxol you take, they did that for me too! Keep me posted as to what happens please, and the best to you.
I thought I was the only one that was affected by Taxol!...

phoenixrising

Hi Anji, I know what you're saying about the bone pain. I had excrutiating bone pain. Almost went to emergency. But it lessened each time. I took Gabapentin and it helped somewhat, but eventually used some morhpine. But I was on Docetaxol (taxotere), which is from the needle of the European Yew tree. What you all seem to getting down there is Paclitaxol (taxol) which is from the bark of the coastal yew tree.

Before I started chemo I did some research and didn't want the taxol, as there were more side effects. The taxotere is as effective, but with less side effects. They had to cut me back even with the taxotere. Both of these drugs use a solvent in order to get to the cells. Nice huh?
That's why we have to take the prednisone before, during and after getting the chemo. To prevent an allergic rx from the solvent. There is another drug however from the same family and I'm sure is as effective if not more, called Abraxane.
This is like taxol but linked to a fat molecule instead of a solvent. There are fewer side effects and you don't need the prednisone. Ask your onc about these alternatives.

I don't know why they don't use abraxane more often. It's supposed to be for people who can't handle taxol/taxotere, but it wasn't offered me.
I'm sure cost has something to do with it.

Another thought. I found out after chemo that I had osteoporosis when I wanted to go on an aromatase inhibitor instead of tamoxifen. It was speculated that perhaps the bone pain was due to chemo meeting osteoporosis. I wonder if anyone has experienced that kind of bone pain with the taxanes and has had a bone density test showing good bone mineral density.

Anji, I didn't work during my treatment and I am still not back to work. I wanted to look after me and make sure I got my rest and wasn't stressed out any more than I already was. Besides I didn't trust the medical community and wanted to do my own research and decide what I was going to do and not going to do. I also spent time with friends and family and just trying to wrap my brain around it. (still wrapping;) I am very grateful for my time off.

I hope this has helped you,
best of luck, we'll be rooting for you
jan

chenheart

Oh yeah! Welcome to the wonderful world of Taxol! I think you see that most, if not all of us experienced side effects similar to yours. And yes,in time, after stopping chemotherapy, gradually the neupopathy, bones and joint pain~ all of it fades into the background. I never would have believed it either, and spent many sleepness nights, in fetal position, rocking back and forth and calling for my mother. And I was 52 at the time!! I never thought my legs (and especially my ankles)would work again, or that the numbess in my hands and fingers would leave.
And yet~ at now the ripe age ( notice I did not say OLD age) of 58, I just got back from 4 days of camping in the wilderness, and walked at least 5 miles a day!! And yes, I am a Princess, and love candlelit dinners, and makeup and getting pedicures. So who'd a thunk it? I can keep up with the 20-somethings at a campsite as well! Hang in there, sister..you will make it!
Hugs,
Claudia

terryI

anji

So glad you found us, hope the sharing with us helps. It certainly helped me and still does to this day. Talk to you soon.

love,
terry i

Melaniesmom

terryI said:

anji

So glad you found us, hope the sharing with us helps. It certainly helped me and still does to this day. Talk to you soon.

love,
terry i

Anji - Hi there Taxol buddy - I am on the weekly dose (4 out of 12 done) of the stuff and I hate to say it but I'm LOVING it! DD a/c kicked my butt and I wanted dd taxol but the doc said NO! I am so glad - I take suppliments - l-glutimane, b-12 blast, a multi and selenium - everyday. I have had few joint pain issues and only took tylenol for them. I must say, I didn't do well at all on a/c - neutropenic 2x's and hospitalized w/no immune system so I thought I wouldn't do well. We are individuals - sometimes I think all my pills give me a mind over matter effect....I'm taking these so I won't have pain.
Good Luck and stay strong - it is only temporary!
Amy

KathiM

Keep in mind this is all temporary. Drink loads of water (keeps the neuropathy at bay), plan something to look forward to after treatment. Much of my success in battling the beast was because of a killer attitude! (I also HATE to lose...lol).

Laugh at least once a day. Even when you feel like crying. Dance naked in the shower. Wake up in the morning thankful to be alive.

I have a new saying: "Some people spend their lives standing and watching, others dance on bars"....

Hugs, Kathi

babs49242

KathiM said:

Keep in mind this is all temporary. Drink loads of water (keeps the neuropathy at bay), plan something to look forward to after treatment. Much of my success in battling the beast was because of a killer attitude! (I also HATE to lose...lol).

Laugh at least once a day. Even when you feel like crying. Dance naked in the shower. Wake up in the morning thankful to be alive.

I have a new saying: "Some people spend their lives standing and watching, others dance on bars"....

Hugs, Kathi

Was that you in COYOTE UGLY? HAHAHAHA

Susan956

I too found Taxol to be a nasty drug. I managed to finish the full regiment... (but I had positive lymph nodes). I still don't almost 2 years out have full feeling in my toes and finger tips.. but is is so... so much better. I lost 2 toe nails... and my nails still are not fully back to normal... but that is what nail polish is for... to hide those little boo boos...

You are probably asking too much of yourself to work full time... I had to reduce my working hours back.. I still work about 3 1/2 days but I could not make the full 5 days.

Take Care... God Bless...

Susan

inkblot

Hi anji,

You've found a really good place to share your issues and concerns. The ladies responding, have given some great suggestions and tips and one thing is for sure...everyone here cares. So many times during my tx, I found that alone to be really valuable.

I didn't have Taxanes, so can't respond to the issues you're experiencing with Taxol. I have several friends who had it and some could continue and some could not. We're all different in what our bodies will handle and what they won't. So be cautious in making your deicsions to continue with it, particularly since your doc is thinking it may be time to stop it. I'd suggest getting a 2nd opinion about it, if you feel compelled to continue with it and see what a different professional has to say about the side effects you're experiencing. May be worth the time as doctor's often have different perspectives and approaches to offer.

The other thing to keep in mind, is that because we're all different, we all can have different short and long term side effects of tx and our quality of life, post treatment, is important to consider. You're doing the best things right now in talking to other women who've had your course of tx and I'd encourage you to do some additional research, while you're waiting to find out what your doctor advises on 10/5. Remember that what YOU want is the bottom line.

Getting the info we need to help us make these kinds of decisions is really important. (asking lots of questions, doing research and getting 2nd opinons). Remember that nothing is written in stone and just because we start a particular tx, hardly means that we must finish it, no matter what. We can and do change our minds and typically we base our choices on what our bodies can and cannot handle. When it comes to chemo, I think it's always a question of "degree" of side effects. One person can experience something as "very uncomfortable" while another may experience the same thing, as excruciating and yet another may find it scarcely noticeable. We're just all put together differently and so, our bodies respond differently. In my humble opinion, only the person experiencing something is qualified to say when it's enough. The exceptions being when it becomes medically life threatening/dangerous or the risk of permanent injury becomes a "no-brainer", so to speak. So, take your time in deciding what you want and need to do at this point. Even once we make a choice, it can be (and should be) subject to change, as becomes necessary.

I'm amazed and concerned that you're continuing to work though such difficulty. If there's any way you can take a few weeks off, (whether you continue the Taxol or not) to rest and give your body a chance to recover a bit, it could be a really good thing. If you can tolerate it right now, it may be helpful to get a nice, gentle, whole body massage once or twice/week? Ask your doctor what he/she thinks about it.

Sending you warm hugs and best wishes for finding the best solution(s)soon. Remember to baby yourself often and try to keep the stress in your life as low as possible. Energy spent managing stress and keeping it at a bare minimum, is energy well spent! Because YOU deserve it anji!

Love, light & laughter,
Ink