Weekly Taxol for Stage IV
 

Amy (MNTGRL) recently remarked the following in a recent thread:
"Cancer is a mind game. If the fear and anxiety take over your life, then cancer wins, regardless of what it does to your body."

...and it really struck me. Now that I am on indefinite weekly treatment how on EArth do I keep those feelings at bay? There is absolutely no relief or escape from the fact that this miserable disease has taken over my life. I live around its effects every day without respite (as many of us do).

Indefinite, weekly treatment. Really? Is it worth it? My oncologist told me that I will stay on Taxol until I cannot tolerate the SEs or it stops working. How do you plan a life you want to live on weekly Taxol? I know some of you have done it and I need your help---I can't even get away for a weekend. At least on the Taxotere, I had a week that I felt well and was able to ignore that cancer has a grip on my life.

We changed to Taxol because the SEs are supposed to be milder but this is an SE that I didn't plan for, didn't consider and don't know how to deal with. I wonder if I should tough it out and ask to go back to Taxotere. I'd rather not, I wasn't able to work and I do see myself being able to get back to at least part time on Taxol.

I could use a little insight. Maybe I am missing or misunderstood something. I plan to have this discussion with my MO on the 28th but it would be nice to have some of your experiences to be lead by.

Re: Weekly Taxol for Stage IV
 

So sorry to hear this.
I had taxotere when initially diagnosed but it was 3 weekly. Just been put on Xeloda on 31st Dec. due to progression (bone). Like you told this is for as long as it works. Only plus is that it is tablets taken at home.
Are there any other options?

Re: Weekly Taxol for Stage IV
 

We haven't addressed other options. I want to stick with the taxanes, they are working so I hate to waste the efficacy and move on to a treatment I might need later. Buying time is the name of the game for us. I wonder if dose dense Taxol might be an option or if the SEs are more like Taxotere.

Hoping someone has some suggestions to bring to my MO or to help me cope with the pervasiveness of weekly treatments. I monthly is doable, weekly has me worked up. Maybe it's just an adjustment and I will get used to it, especially if someone tells me that I can skip or hold doses so I can go away for a weekend.

Re: Weekly Taxol for Stage IV
 

Some of the ladies here have delayed treatment a week to go on holiday so hopefully you could do this.
Your right it is an adjustment! I was on H,P & Femara until 31st Dec. When I was told about 2 bone mets - treatment immediately withdrawn & put on Herceptin injection & Xeloda. Didn't have time to think. Only now adjusting to the change.
Take care
Juls

Re: Weekly Taxol for Stage IV
 

Tracy - Sorry you are going through all of this, I am praying for you everyday. I totally agree with you on cancer being a mind game, I am the most positive person but once I was diagnosed, cancer had a vice grip on my mind no matter how hard I tried to stay positive.

I had Taxol as my last protocol drug weekly infusions and I was able to take a holiday when I wanted to go on vacation. You may be able to do this too, you need a mental break.

Hang in there, praying for you - many hugs!

Jessica

Re: Weekly Taxol for Stage IV
 

Me too along with Jessica, Tracy.

Carol Ann

Re: Weekly Taxol for Stage IV
 

Tracy - I'm really sorry you have to go through this. It sucks but take it a day at a time (sorry about the platitude, but that's all any of us can do). I honestly don't know how I would cope but I'd bet my feelings would be very similar to yours.

Please know that we are all pulling for you!

Janis

Re: Weekly Taxol for Stage IV
 

Hi Tracy,
What about Abraxane? - I believe that it is the most tolerable taxane. I sympathise with your dread of weekly treatments, but have heard taxol is easier than taxotere (which I hated, though it was truly effective for me).
Is there also a hope that the chemo might shrink things enough to then reduce treatment for a while? The prospect of treatment for the rest of our lives is depressing, but they surely vary in degrees of awfulness!
Best wishes..... Pam

Re: Weekly Taxol for Stage IV
 

Hi Tracy,

I am currently on taxol and herceptin. I get taxol on day 1 and day 8 with one week break. Perhaps you can ask your Onco about that? I too felt pretty defeated when my Dr told me I would be on taxol as long as I can cope. The thought of having to continue doing treatments with no end was detrimental news. Rest assured that there are other treatments after this and I do find it rather easy to tolerate. I can drive home after treatments and I can work and do day to day activities. I did have some back pain and it appears to help with that. Also, I was given a 2 week break from treatments last month so it is do-able. Hope this helps and feel free to PM me if you need someone to talk to.

XoxoN

Re: Weekly Taxol for Stage IV
 

Tracy,

I'm so sorry this is such a slog for you. I was on weekly Taxol for three months. It was my first 3 months of treatment, and I was in a daze. But I started doing guided imagery almost as soon as I was diagnosed, and I did a lot of knitting.

I am not consistent about engaging in practices that I know to be helpful in addressing anxiety and fear, but even though I'm not "good" at it, I have found these things to be helpful:

--Mindfulness. Even for just a moment, slow down, take a deep breath, follow the breath, do a body scan. Note how your body feels. Take that state of relaxed awareness of what is going on right now with you into your day as often as you think of it. See. Smell. Taste. Listen. Be here now.

--Guided imagery. I was recently introduced to yoga nidra, and I love it. It's like a little vacation. I also have guided imagery products from a group called Health Journeys on cancer, relaxation, and also trauma.

--Creativity. Do whatever you can really get lost in, just for its own sake. For about six months I spent a lot of time coloring mandalas. I don't know why, but I found it soothing.

--Touch. (I live alone and have no pets, so I really fall short here.) Hugs, snuggles, massage. Petting a dog or cat. Holding hands.

--Denial. I had an uncle who was a survivor of the Bataan Death March. He said that in prison camp he started an "I like it here" club. He said not too many people wanted to join. But one of his survival strategies was straight-up, flat-out denial. For a fantastic example of this kind of technique, see the movie "Life is Beautiful."

--Journaling. When I'm anxious there's usually something underneath. I do free writing, exploring what I'm feeling, describing it as accurately and immediately as possible, and resisting the urge to react, interpret, or evaluate. I usually don't feel like it's helping, but often look back later and realize that it did.

--Talk yourself down when you're feeling panicky. Take five to ten slow, deep breaths. You might do a "breath prayer" with it, repeating one phrase on the inhale and one on the exhale. Something like, "Breathe in light, breathe out darkness." Or, "there is/ no tiger." Or you could visualize a stop sign. Or imagine you're a little girl in the lap of a safe, loving, trustworthy adult who's giving you encouragement and holding you close.

--I am never anxious when singing or knitting. I have knitted a whole lot of things since my diagnosis. Plus I'm creating artifacts of my presence on the planet.

--Dance. Dance fast to a strong beat until you're sweaty and out of breath. Or put on something soulful and use your body to express your feelings.

--Read whatever you classify as "escape fiction." Watch funny or romantic movies, or action movies, whatever makes you forget who you are while you're attending to it.

As for my opening remark about not being good at these practices. I think that's part of the practice. I do the best I can. I don't drown myself in recriminations when I forget to do them or backslide or whatever. I'm trying to learn to love myself and love my life the way I am/the way it is. I can't build on weakness, so I try to notice strength and build on that. Like the instruction for meditation that if you notice your mind wandering you "gently" bring your attention back, I try to be gentle with myself.

Re: Weekly Taxol for Stage IV
 

Thanks Amy. I'm just trying to figure out where to put this advice so I'll find it whenever I might need it again. Making it into a prepage of that cancer diary seems a good choice.

Re: Weekly Taxol for Stage IV
 

I forgot to mention affirmations. I learned a set of them from the Health Journeys CDs/MP3s. They include things like, "I am healing and I will continue to heal," one of my favorites.

Whether or not these strategies extend my life, they make life richer, fuller, and better from moment to moment. And, really, the present moment is all we have. Right now, nothing bad is happening.

Namaste,
Amy

Re: Weekly Taxol for Stage IV
 

Tracy,
Amy said it very well, and perhaps later I'll start another thread with "coping skills" as a heading, I'd like to save her post, too.

Meantime, I have a younger friend, who is a stage 4 thriver for 13 years! She is her2+ along with ER+ has been through the ringer, back surgery, body casts, she's still in her 40's, strong family history, lost her mother years back, YET she manages to mostly keeps her act together.

She is my hero for how she handles her life, so I'll try to articulate how she manages. Firstly, she is never in panic mode, she takes in news in a calm way and then gathers info and talks/networks, then makes decisions. She does weekly navelbine, along with Herceptin (not sure if that's weekly) and she takes breaks when needed. She also travels as an advocate, and speaker and many times she arranges to do her infusion in other cities - that's the epitome of brave. She is single by the way, which is harder than if you have a partner to support and reassure you all the time.

I think for my friend, the ability to make travel plans, and then plan chemo or treatment around these trips that make her happy, give her something GOOD to think about. Planning treatment around travel makes it more in her control. Then the travel becomes priority and treatment just a matter of fact. I've copied her often, announcing my travel plans to my team and saying I'll be skipping the following treatments, allowing time to bounce back before the trip so I can enjoy myself. Travel escapes really work, the world keeps spinning and I feel like a "normal" participant in life.

I've said this for 16 years; "Cancer is a mind game". If you can change up your thoughts once you've made your treatment decisions, quality of life vastly improves. And as Amy pointed out - it is a practice. And as our parents liked to say: "Practice makes perfect".

xoxo

Re: Weekly Taxol for Stage IV
 

I started Taxotere, Perjeta and Herceptin, July 7th, 2015. But the side effects of the Taxotere were too much, and we switched to weekly Taxol in November. Yes- the "indefinite," part is the hardest to hear. But two times we've delayed a week, so I could travel, and I have to say it feels like I am managing better- especially after I had my 3 month PET scan at the end of December and was told I had a Complete Response. First time in just under 5 years I've ever had a CR or been NED. So we just reduced the dosage a bit, and will continue on, indefinitely still. Its always reassuring to sign in and see that I am not alone in what I am experiencing and going through.

My saving grace has been a stage iv support group started at my treatment center. We were awarded a grant from the Avon Foundation and meet once every two weeks with a therapist who helps us with whatever we are dealing with at that time- (no cost to us) We also practice mindfulness, meditation, etc., and have created lists of coping strategies, etc. that we all have used. We are a well bonded group and the face-to-face time truly helps see us through.

Peace and love to all~
Vicky

Re: Weekly Taxol for Stage IV
 

Hi Tracy - Just checking in on you to see how you are doing?

Re: Weekly Taxol for Stage IV
 

Hey ladies, thank you for all of the great input. I love the strategies for coping and moving through the difficult days. I know these are meant to be long term life changing habits but I am finding they do work, even in the very short term. Great stuff you have provided and I do believe a spin off sticky would be very helpful for revisiting or for newcomers.

I am elated to hear that treatments can be postponed for travel. This is so encouraging that I am going to start planning some trips, I think they too will be therapeutic. I am really excited by the thought of a retreat and I will be certain to budget in my treatment withholding and retirement robbing to fit it in. It's something I do not want to miss.

I'm doing a great deal better, emotionally and physically. I just had a week of the reality of what we face as stage IV patients. I will do as suggested and make a different reality. A reality where I am going to retire 20 years early and enjoy all of the things I have always wanted to do and make that weekly visit to sit in the chair and hold the hands of cancer patients as they take treatment with me and we will all be well.

Re: Weekly Taxol for Stage IV
 

Good to read you are feeling better
Juls

Re: Weekly Taxol for Stage IV
 

Tracy,

So glad to hear that you are doing better. I think of you often, sending positive healing thoughts your way. I also retired way before I planned (about 10 years) and have found it to be one of best decisions I've made. We never know what the future holds and I didn't want to spend my time working. Because I'm not stage 4, I wasn't eligible for SSI. I do miss the paychecks but have adjusted my spending and lifestyle to my current reality.

Have fun planning those vacations and I hope to meet you in person if the HER2 retreat comes to fruition.

Take Care,
Brenda

Re: Weekly Taxol for Stage IV
 

Tracy, I am so happy you are feeling better. Taxol and Herceptin do not have to be forever. I always try to have a plan A, B and possibly a C plan. Things change. Treatments get better. You never know what new treatments are coming along. You always have options. I have seldom let cancer scare me, I just go with the flow and deal with the punches. I think that really helps.

Sending you lots of healing wishes

Re: Weekly Taxol for Stage IV
 

Tracy,
You will be able to take it. Chose a good day, maybe a Monday so that if you're tired from it, it won't effect the whole week.
I was on weekly Taxol for 6 months and I found reading very helpful, it took me away. I also would turn up the Eagles "Get Over It" up loudly and listen to it whenever I felt sorry for myself.
I was able to postpone a treatment so I could fly with my husband to Paris so he could meet with a surgeon for treatment for skin cancer on his lip.
I was also offered a break after 4 months but I stupidly didn't take it and the following week I did have my first and only anxiety attack at the hospital but it passed in about 20 minutes just in time to get the infusion. So if a break is offered, I would take one. And if you want to go away somewhere, ask about postponing a treatment.
Think week by week not forever. I was told I would be on Herceptin for life. I got into the habit of celebrating each visit to the hospital to get the treamtment knowing it was keeping me alive and I would take the nurses chocolate, talk to the other patients and get them coffee or magazines and time passed and I didn't mind it. After 6 years they decided I could stop and we could see what would happen. I was actually a little nervous about stopping! I stayed on it about 6 months longer because I had to get ready to stop! So hang in there.
Amy I loved your suggestions and I have forwarded them to the support group I belong to here in France for English speakers. We have free Mindfullness classes for cancer patients and their caregivers and they are quite popular and helpful. it's been scientifically proven that it helps.
Tracy, I know forever sounds forbidding but you can trick your mind. Enjoy your life. Remember, "Living is the best revenge"
Live well, be strong, your HER2 family is with you.
hugs and love
sarah

Re: Weekly Taxol for Stage IV
 

So glad to hear you are feeling better and loving your positive attitude! Will be working on the retreat this week, it will be the therapy you need :)

Re: Weekly Taxol for Stage IV
 

Checking in on you Traci - How are you feeling/doing?

Re: Weekly Taxol for Stage IV
 

Hey, Jessica. Thanks for checking in. I haven't been doing great, a lot of pain, nausea and fatigue. I took a three week break from chemo to get feeling better before we hit it hard again. During my break, I went to visit my family in Sarasota. Sunshine therapy and baby (my sister's) therapy do more than chemo could ever do. I came home really feeling positive and less fatigued with no nausea. My pain has advanced though, it's still all bone pain so that is encouraging. I have scans (CT and Bone)on the 28th and I will know better if this chemo is doing anything. Hoping the pain is just Zometa doing its thing.

I got myself in a bit of a funk. I applied for (and received) accelerated death benefits on my life insurance policies and my retirement. My MO signed off on less than a year life expectancy, of course he told me that it didn't mean that I would die in that time frame, just that he can't say I won't. His actual medical notes do say life expectancy of 12-24 months. That was tough to see in writing and I don't think he ever planned for me to see it. The insurance company shared it. I'm not giving up, just got a serious glimpse of reality. I want to live. I plan to live. Cancer is scary. I could get on the right treatment and have decades of remission. I could die before the leaves fall again. The uncertainty is what wears on me, that and the weekly visits to chemo room. I love the people I take treatment with, they are sweet people who do not deserve to suffer the way I see them suffering. They are all older, decades older than I am so it is a pretty grim atmosphere. ...and it's been rainy and raw all week. I am SOOOO looking forward to Spring doing its thing. I need to feel the sun on my face to get out of this funk, soon, soon enough. I just need to keep treading water until the weather breaks.

Sorry to be so grim. I get quiet when things aren't going well, withdrawn. Thanks for calling me out. How are YOU doing? Are we still looking forward to a retreat? :)

Re: Weekly Taxol for Stage IV
 

Aw Tracy - sorry to hear you've been going through a rough patch. You have been through the wringer but you are a fighter and you are fighting the beast. I admire your courage and honesty.

As you said, spring is right around the corner (although it's supposed to snow this weekend in my neck of the woods!).

Take care
Janis

Re: Weekly Taxol for Stage IV
 

I read your post earlier, and you've been on my mind every since. It's just about 12:30 am, and I just want to write you before going to sleep (or my version of sleep)...I am very glad that you posted the truth of what you are feeling. It's so vital to be able to state the truth, we are your witness's and your friends. There are words you cannot say to family and friends, truths that they cannot handle, it is crushing what you/we live with. Sorry this will jump around a bit...reading the words 12 - 24 months to live, is crushing. Takes my breath away. Yet, it's those words that help facilitate getting the money from your life insurance, or in my case the word was "terminal" and that helped me get on disability. These words are crushing. Heartbreaking. Unfair.

Cancer is a mind game. We must keep our head on straight, and keep our focus. Going to Florida was brilliant, a great way to nurture yourself, and be captured by the baby, and the love of your family. I went to Florida last October, for the exact same reason, to spend time with my father's cousins, well in their 70's, they are the closest I have to parents and I did nothing but sit around their house, talk, laugh, eat, enjoy the backyard, the nearby Clearwater beach, and rest. It's so exhausting, the physical assault of the chemo, the mental exhaust of the fight, the pain, the panic, the decisions, the thinking.

I am truly so sorry that you've hit a rough wave. I don't know how you handle the pain, I've had this debilitating sciatic pain since Jan 20th, not that I'm counting the days or anything. Finally, I had surgical consults and will have a small repair job in another week. Grateful that it's not cancer (that we know of) and grateful that there is another opportunity to get well again. Living with pain for the last 12+ weeks has scared the crap out of me for when it is cancer pain. How will I cope? But, as you demonstrate, you find a way and keep moving forward.

If you are still feeling too sick to have treatment, how about doing the HP portion (herceptin perjeta?) and give yourself another week before the Taxane? Another thought is adding in Tykerb. Not sure if you can Tykerb with perjeta, but you can Tykerb with Herceptin, Zometa, and Taxane. You don't have to take all 5 or 6 pills, there were a bunch of us taking 3-4 pills a morning and doing very well!! They cross the BBB and many people do well wth them as part of the regime.

Well, I'm falling asleep as I type, so will say good night for now. I am so sorry that you are going thru such a crap time.
Keep fighting! I know you are strong!!!!
Big hugs,
Flori