a/c t/h chemo

[Heart Sutra]

Hi everyone,

Thank you for being here.
It's been a long time since we posted, and truthfully a long time since we visited. Though this site does a great service, it can be harmful to fill all days and nights with thoughts and fears of cancer, which we did despite knowing better. It's a tough run.

Sue's treatment with A/C, then T/H chemo was horrific, and is only slightly better now. She hit the jackpot with having nearly every one of the "Possible" side-effects, with the expception of death caused by chemo.

She was switched from Taxol to Taxatere, which does seem to be making these last two treatments better. She will then have a year a Herceptin every 3 weeks left.

With A/C treatment, she was completely incapacitated 5 days on average with a 2 week cycle. Completely means completely unfortunately. She experienced the severe nausea, mouth sores, nose sores, vaginal sores, severe headaches (She had chronic migraines before chemo, chemo brought them on) vomiting, fatigue, hemorroids, severe constipation, period every 2 weeks, and probably one or two more we've missed here. Her blood counts of white and red cells went through the floor, and that was fixed with very painful, very expensive, injections which kept her body alternately killing, and rebuilding itself. There is no pretty way to say the truth, and why even try?

All of this chemical induced misery was countered with other chemicals that helped to some degree. She refrained from taking any "folk cures" except marijuana, which did not help, and trying a vibrating pillow held on her stomach for the constipation.

With Taxol and Herceptin, the nausea was lessened, there were no sores, the headaches were gone, no more vomiting, and her period stopped for now.
But replacing that is joint pain that brings her to tears, numbness in her extremities and her mouth that is alternately annoying or painful, and drastic mood swings. The joint pain resulted in a switch from taxol to taxatere, and so far it is working out.

She describes her experience as a temporary chemical induced death, and I can't argue it, not that I would anyway. No wonder so many abandon the treatment for the wishful thinking of whatever is the magic healing practice du jour, it is certainly understandable. There is no reasonable way to imagine that chemo does not cause harm as well as kill cancer cells. There is no way to feel, despite all reassurances, that chemotherapy is anything but a crude and blunt instrument even with all the advances that have come. What would be worse is for it not to be available. Not a fun run at all.

This is all as a preventative measure. Sue had clear margins after her mastectomy, There was no node involvement, her scans were good, her blood work is good, as of today, there is no indication of cancer anywhere in her.

May it always be that way.

Good luck to all of you new friends and old, we think of you often.

[saleboat]

Oh Kevin & Sue,

I am so sorry to hear of what your experience has been-- poor Sue, that all sounds so unpleasant and awful and at least, knock wood, the worst is over.

Thank you for checking-in. And you are very correct, the internet can be informative in a situation like ours, but it can also fuel fires and plant the seeds of anxiety. It isn't always easy to find a happy-medium, but this site comes very close.

All the best, and good luck with the rest of the chemo ride.

Jen

[AlaskaAngel]

Your position now, after having seen what you have seen, has changed. You express your circumstances very well.

Even though not everyone goes through what you have seen, it is impossible to know before one starts treatment just what it will be like for any given person. Thankfully the question of what treatment to do for breast cancer has already begun to change for those in the earliest stages. Thank you for openly saying what you have seen, so that at least those who are borderline--or with even better odds--have something credible to consider in making their decision whether or not to go forward with the most toxic therapies possible.

Best to you and Sue,

AlaskaAngel

[Mary Jo]

Hi Kevin and Sue,

Wow................you've really went through hell Sue. I can't even imagine what this has been like for you. Actually for both of you, as being the person watching it all it has to be horrible. Thankfully, you are almost finished.

I understand what you are saying about surrounding yourself day and night with cancer. Definitely not good for the psyche. I, too, occasionally take a day or two reprieve from here and I will say, on those days I think less of recurrence than when I show up here many times a day. I just can't help myself though. I guess on the other hand I've come to "know" many here and I want to see what everyone is saying - doing etc., along with offering encouragment, hope and love to everyone AND asking an occasional question.

God be with you both. I pray herceptin alone will be a walk in the park for you Sue.

The Lord's Peace I send you,

Mary Jo

[rinaina]

So sorry for all Sue has had to endure. We can all relate to some degree or another but for me, as bad as I was on chemo, (AC), and believe me I was sick most of the time in between cycles, it was't as bad as Sue had. My heart goes out to her and you. I know Herceptin will be a cake walk for her and she deserves that and much more. The good news is she is NED and hopefully will continue to be.

[Bev]

Sorry Sue and Kevin that you've received every side effect in the book. My nurses told me to do B6 for TH related pain.

By my calculations you have 3 more months of T. By August, the cloud will start lifting. Hang in there. Take a great vacation. BB

[Shell]

Sue-


I am so sorry to hear of the rough time you've been having during chemo. Here's hoping that the worst is over, and that herceptin goes smoothly.

Regards,

[tousled1]

Sue and Kevin,

I sympathize with what Sue has/is going through. When I was on A/C I too was plaqued with the mouth sores and my red/white blood counts dropping out. I was getting the Neulasta shots and Procrit shots. I didn't have Taxol but did have Taxatere. I had severe bone/joint pain with Taxatere and also my counts continued to drop. I was so thankful when I finally finshed my last treatment. There were times when all I did was cry and say I can't go through this anymore. I'm almost finished with my year of Herceptin. My red count still drops and I still get Procrit shots. Last week when I had my treatment it was the first time that I did not require a shot -- my counts were all good. After all that Sue has been through when she starts the Herceptin only it should be a breeze! It's amazing what the human body is capable of withstanding. Hang in there, it will get better I promise.

[Diane H]

Breaks my heart to hear what Sue has been through, and brings back some bad memories of my own. It's true, at times it was absolutely horrendous the side effects. From my own experience it will get better from here on out, but it really is quite a slow process. Herceptin is not a big problem with side effects, I opted for the once every three weeks regime as I simply could not psychologically make myself go in every week. Keep looking to the future it is good and waiting for you Sue.... BIG hugs from me to you, Diane

[Heart Sutra]

Thank you all for being here. Thank you for your kind words and thoughts.

Alaska, Alaska...

No change of position here at all. There may be ever changing alternative therapies in the world of modern medicine, but the alternative treatments of quackery are still kept at a safe distance. We're not willing to go see the Reikki master or acupuncturist, though we don't think badly of anyone who does. We're still not giving quarter where none is due...'nuff said.

Chemotherapy is, as you once described, the medicine that tastes worst. It is a blunt, and somewhat violent, tool. As crude as chemo is, credible studies supporting better valid alternatives are slow to be found if yet at all. We all wish for faster change. It is unfortunate that for now there seems no better option, though certainly there are options galore.

I wrote details of Sue's chemotherapy because we were a little caught by surprise, and maybe her experience will help someone else to not feel alone. She is strong, but I wish she didn't have to be.

To be clear: Although I said that I certainly understand why someone would want to abandon this treatment, I loathe the thought of that being misconstrued as advice to do so.
Sue is here editing me... which as you may well imagine, consists mostly of admonishments

Best of everything to you all

[juanita]

My heart goes out to you and I must congratulate you on making it through the ac. That was what I quit because of the severe vomitting that I had with the tac combined. I didn't have the mouth sores like you, but I was really out of it for about two weeks, then would start feeling better in time to go for the next treatment. Herceptin will be a walk in the park compared to what you've been through.

[AlaskaAngel]

Heart Sutra,

I'm sorry I misunderstood. I agree that realistic options are today still much more limited for those with higher stage initial diagnosis. But I did not generalize. I limited my comment to those with early diagnosis, who have more reason not to go to extremes out of fear, and who are trying to be strong enough to find their way with tests like Oncotype Dx.

AlaskaAngel

[Barbara2]

I was also very ill with treatment of CEF x 6 (similar to AC minus the "F," Flourouracil). It wasn't dose dense, which maybe would have helped, some. With each treatment I became more severely ill, until treatment # 5...the next day I went into septic shock...the onc told my husband I had a 50-50 chance of survival for that day, or two.

After all that, I insisted on treatment #6. My husband was so fearful, but supported my choice to continue. We decided to use 1/2 of the normal chemo dose. I again ended up in the hospital, but no septic shock this time. My body was covered with blotchy purple everywhere. I asked the nurses what it might be. They had not seen it before.

Looking back, I'm sure it was all the chemicals that were in my body that caused me to turn purple. As awful as the whole experience was, I'm thankful for time that I may have not otherwise had, if I hadn't taken the chemo.

I never had any taxol, but did have 26 months post chemo, herceptin. By then my body had time to heal and life was much more normal again. The herceptin had side effects, but they didn't hold a candle to the chemo.

The govenment has cut back on $$ they will contribute to cancer research, research that could save lives, and instead we are putting that money elsewhere. So, we will continue to wait...but someday we will have more answers for cancer. Until then, we count our blessings for progress and options that we have for now.

Sue, you have been through the worst part...the light at the end of the tunnel is much brighter now. Hold tight...life will slowly get back to normal, at least physically. Get lots of rest and sleep...try to reduce your stress level. As you heal, and you are able to "think" again, you will come to remember how it felt to feel good. Your life will never be the same again because cancer changes how we look at life. Each day will be brighter, and the world will be even more beautiful than before.

Sending healing prayers to you and all who are battling cancer.

[suzan w]

I, too, had every listed side effect from A/C, and then some! Could only complete 4 out of the 6 recommended treatments. And decided to opt out of taxol...just could not gear myself up for it! My oncologist supported those decisions as I was early stage and the chemo was more for prevention of distant recurrence (based on oncotype). Now I understand that the oncotype comes back high for most of us Her2 's...I can't second guess my decisions now, made the best choices at the time! Hope you are feeling better now.