Weekly Taxol for Stage 4
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Syrmom, I'm so sorry to read your news. Progression is so scary and all the more so while you're waiting for the plan of what the next treatment will be. Timing is rotten also, hope you'll be able to get caught up in the fun and joy of your beautiful daughter's wedding and 'be' in the moment. Cancer sucks, it's so unfair. I hate, hate this disease. Sending you love and holding hands tightly. Hugs xx
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SyrMom- I don't even know what to say. To go through all the side effects of a treatment and then have it fail you is a double betrayal. Yes, Cancer sucks.
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I look in the mirror and I see a lump that is the port that will probably be in place for a long time. I have circles where my .nipples use to be and transferred stomach fat where my breasts use to be. The skin there has the faded stretch marks of 4 babies who are now good men. I have a scar where my gallbladder was,, a vertical scar from my navel to a horizontal smile left by my reconstruction. I
It is strange to me that I love my body more than I ever have for my body hides no lies. I now have the body of a warrior.
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Syrmom, i am really sorry about your progression, this is not the news we wanted to hear , and I totally understand your frustration and anger. You have every right. But I agree with Shezzakelly, don't think of anything till after the wedding , it doesn't change anything. After the wedding is a different story and only you can decide what is best for you. We are all here for support. You are in my prayers all the time, sending big hugs.
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Brigadoon - Every time I read your post on your body as a warrior, I gain strength from it. And btw, if you're the one that lives on the beautiful farm, I want to move in with you and the fam, OK?
Because it seems like the most peaceful place in the world...Syrmom, a friend reminded me once that even good stress (such as the upcoming wedding) is stress, compounded with the stress you have over physical issues. Just take a deep breath, focus on the happy stuff, then deal with this cancer stuff. One issue at a time...I think of you a lot although I don't wrote much on here.
Off to see the doc and get my Taxol today....
Laura
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Thanks ladies. I've had a week long temper tantrum, haven't even talked to my "healthy" friends. So stupid, I know. I was just was not ready for that news on Monday. I guess I had started to get comfortable with the word "stable," for the first time in years. Even my hair has been slowly growing back under the wig (not enough to feel comfortable going wigless in public) & I had been feeling so good about that. Now I get to lose it all over again, I'm sure. Don't know what the next tx is yet as the Onc is on vacation, but I know the one chemo I dread & refused once before is on the list. I won't be able to find 1 hair on my body, let alone on my head, with that one.
Thanks again for your support.
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Let's hear it for tantrums! I so get that feeling., Syr. Just had fifth eye exam since April, and the eye met is holding but no longer regressing. So the doc thinks its from lightening up the Taxol dose, which I am only doing so I can keep taking it. He was nice about it, very empathetic, which helped. But every now and then things like this slam me back into what stage four means. I prefer a state of moderate denial, personally.
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SyrMom,
Sorry you are still struggling with the results of your latest scan. When does your onc return from vacation? It sounds as if you really need to talk things through with him/her. I know you don't want the AC(?) chemo, but there will be other TX you can try which may be gentler on your healthy body while crushing the cancer.
Hope that all this cancer crap doesn't get in the way of enjoying your daughter's big day. I hope it turns out lovely for everyone involved.
Hugs, SW
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Had an uneventful taxol #16 yesterday. Didn't see my onc as he was at a meeting off site. I asked my chemo nurse for a copy of my blood results. They normally give me a little print out that looks like it came out of a cash register but this time I got the full 3 pages. The best news from that was my Hb is back to normal and I have plenty of energy after my chemo break. Seems like my onc is monitoring one of my tumour markers, CA 15-3. It was 27, a couple of points outside the normal range is 0 - 25. I have had a summer cold and UTI this week so I am not in the least alarmed by a reading of 27.
Also,I saw the surgeon today who put in my femoral rod. My femur is still healing, albeit slowly, following the fracture last March. I have organised some physiotherapy to try and regain more functionality in my leg. I still walk with a limp and I would like to get rid of it or at least smooth it out so it is not so pronounced.
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MameMe, It would be great to here that there had been more regression on your eye met but at least it is holding steady. BTW, I have days when a bit of denial gets me through so I can see where you are coming from with using moderate denial as a coping mechanism.
Brigadoon, "I love my body more than I ever have for my body hides no lies". I love what you said there.
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Okay, what is with the crying jag at the end of the steroid high? I have read about it but never had it first hand. Yesterday when we came home from our Thursday family night at "The Wheel" I was tired and easily transitioned from clothes to nightgown planning on a full night's sleep. I went to my room and suddenly I was overwhelmed. Tears just kept springing and I kept sobbing and laughing all together. I said to myself "Why am I crying?" and then it came to me that I was crying because I was tired and my legs hurt and my wig was fooling everyone but I still needed a wig and for my web friends MameMe, Springwatch, Syrmom, Aoibheann, BlueDahlia, so many who are only an icon or a name in my head but so much more as we share all that life is giving us good and bad. It occurred to me that in some ways I know you all more intimately than I do so many people in my life.
I am so thankful for all the courage, shared experiences, life joys, everyday snip-its and battles that you all so graciously share. Thank you for being the place that I know I can come to find understanding and for allowing me to cry for all of us - - probably at least once a week!
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Brigadoon, I sometimes feel overwhelmed when I think about where I am on my journey. It hits me hardest when I am having a normal day doing normal things. For a time I forget and then it all comes back in a big rush. Maybe your family night got to you in a similar fashion. It's hard to deal with sometimes.
We are dealing with the remnants of Hurricane Bertha here so I am glad that I got outside yesterday and enjoyed some warmth and sunshine. Today is a day for a little baking and tidying up my paperwork. Part of the getting my affairs in order that I keep putting off. Seriously, I do have a lot of rubbish in my files. Why did I keep utility bills going back 5 years??
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Springwatch - If I ever get my attic cleaned out it will take ten years!!
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Today I overslept and missed church, again. Awakened to rush to the bathroom where even though I am 4 days post my 30 th dose I still have diahrrea, this time ending with dizziness. My blood pressure was high not the expected low, so I did take my pain pills.
We have been enjoying a visit with our married 23 year old son. This time without his lovely wife, so he slept in his old room. He is such a blessing to me. And my DIL has posted on line some fun pictures of our 6 month old granddaughter. Lazy weekend, back at starting the morning.
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Brigadoon, I forgot about the stuff in the loft! That would be a week's project for me, if I was up to the job. One more thing to sort out!
ADJ, Does your doctor let you take anything for the diarrhoea? I am allowed to take Imodium (loperamide) but not for more than 24 hrs. There was a reason you overslept - your body needed it.
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The day I got the stage 4 dx, I started thinking about the " Get my affairs in order..." thing, then as the weeks rolled on, let that slide to the back of the list. So, the lastest feature of Taxol is nails loosening on my right hand, to add to the heartburn, metallic taste, Big D and Big C, impending baldness, AND get your affairs in order. To top it all off, there's the routine scans and tumor marker lotteries.... could life GET any more interesting?! I need to group the work involving my files and storage areas into two hour tasks, and then plunk away at it a day at a time when the energy is up. Oh boy, can't wait.
Its a gorgeous day in Maine, we are processing a bushel of ripe tomatoes that a friend grew, and getting settled from a short trip to my MIL's home in MA. Its always great to get home after travelling.
Hugs to everyone; use those meds and urge those side effects back into submission. Time for some Prilosec here.
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springwatch,
Yes, I can take Imodium, but seems like BigD is just once a day as it is.
Anita
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I'm in the chair for No 45. Feeling exhausted for some reason. I get the big D too, usually for 3 days of every week. The rest of the time I'm constipated go figure. I think I'm solely responsible for keeping New Zealand's kiwi fruit industry from going under. It's a great cure for constipation.
My 16 yo daughter had her first school Ball on Saturday. So much running around on the day with hair and make up. But she looked beautiful. So pleased I was able to enjoy that milestone with her.
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That's wonderful, Shazza. You're probably exhausted from the week-end, running around and all that goes with it, physically and emotionally. So glad you were able to enjoy that milestone with her.
I also had taxol today (34) because a a new plan has to be made & will begin after the wedding. I don't want to start anything new before then. Wrestling with whether or not to have chemo next Mon., the week of wedding. Been planning to cancel it, but somewhat paranoid about doing that. Get this, tumor markers were drawn again today (usually only once a month, but think this was really an error draw) they went DOWN 5 pts, even with the progression, very weird.
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have any of you with big D tried pepto bismo? That works better for me then the other stuff. The constipation is from the cocktail before taxol. Prune juice has worked for me and hummus.
Shaved my hair off two weeks ago. It was like " dead" hair and decided to get rid of it. Port doesn't work; had repositioning but still didn't work. Wednesday getting old port out and new on. Taxol #5 on Thursday. No rest for the wicked. Sigh. Apparently the taxol is working on some level as I still don't need kidney stents. Oh yea.
Syrmom I don't get TM. I had clear pet after clear pet scan with marker elevating. Finally showed progression. Marker was 773. Here's hoping my next marker test is showing something worth the taxol. I get you feel a little paranoid about taxol next week. To do or not. Here's only wishing you a good week with or without....a wonderful wedding is on the dock.
Shazza how wonderful to enjoy your daughters first Ball. Indeed milestone. For mom and daughter.
I started to get my affairs in order back in 2002 when initially dx with stage 3. With the mets I pretty much finished up loose ends. I am single so had to get it all figured out. A lot to think about when you are dealing with cancer. The weekly taxol keeps you very busy along with other doc appts. In 2002 I was on chemo every 3 weeks. This weekly stuff is a lot and with my broken port it was a pain in the butt. Hopefully I will get a working port Wednesday
You all hang in there even on the bad days. Here's to praying and hoping the taxol is killing cancer cells for all of us.
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Shazza, My gut feel would be that your exhaustion comes from running around at the weekend preparing for your daughter's ball. Hopefully a couple of days of good rest should get you back to where you were before. Really pleased you got to share this milestone with her. I hope she had a wonderful evening. No 45 - wow! Has to be the new record. Jennifer who started this thread went to 44 IVs before switching to a different therapy.
SyrMom, I think making a decision about whether to go ahead with the taxol next week depends entirely on you. Missing a week isn't going to make that much difference. After all some of us, myself included, have had their weekly taxol cancelled because of an underlying medical issue with out causing any obvious harm. I don't get too excited by tumour markers. They are good predictors for some but not others. I listened to a talk by Dr Gralow, director of breast medical oncology in Seattle, who said she does tumour markers but looks for a trend not the absolute numbers. If markers go up, she will send her patient for scans but if these come back normal she wouldn't change their treatment. She also said she has patients who have markers around 3000 but their disease is under control. Too many things can effect the numbers.
Diana, Sorry your port is broken. What a pain! I hope getting the new one fitted tomorrow goes smoothly.
... Re: Big D. Taxol always gets me Day 4 after treatment. Never far from the toilet on a Sunday!
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I am posting this on a couple of boards because I think it is interesting and might help someone.
http://blog.dana-farber.org/insight/2014/08/post-traumatic-stress-and-cancer/
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hope everybody is doing ok. I started cycle 16 today. No 46. Have been having some issues with my hip which I don't think are cancer related but my Onc is going to send me for a MRI just to make sure.
Off to work now hope you all have a great SE free day
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Hi All,
Thanks to all of you for sharing your stories about Taxol. I have been previously taking Xeloda, which has failed. My tumor markers have gone up and I have frightening tumors in my neck lymph nodes and over my sternum. I go in to the onc tomorrow. I have some questions for any of you who see this before Tuesday afternoon (US Central Time).
What is the difference between Taxol and Taxotere? Do any of you know if there is a benefit to one vs. the other? I have been fortunate enough to avoid IV chemo up to this point and am scared out of my wits of IV chemo. I am also petrified of the increasing tumors near my throat.
I am still working full time as well and wondered if I am unreasonable to expect that. I have a desk job without lots of physical demands.
Help! Scared.
Thank you all for your answers in advance and support. I love these discussions. I had been previously posting on the A/A and Xeloda boards.
Liz
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hi Liz
I just started taxol July 8. I get it weekly for three weeks and rest one week. Then repeat. I think that both taxotere and taxol work similarly but with taxol you can get it weekly or 3 weeks on and one week off. Or even every week. Depends on doseage and mets. Not sure but taxotere is given every three weeks. There are studies looking at this but it seems the taxol is used as a single agent. Good questions to ask your onc.
My side effects are fatigue, low blood pressure , headache , low counts. Not sick. Constipation from steroid and stuff they give you when you get infusion. Prune juice helps. Other side effects....IT KILLS CANCER. I am 62 and retired. But I know there are people working and getting taxol. We are all different when it comes to side effects. If you google the drugs you will find info. My doc gives me fluids and magnesium the day after infusion if I need it.
Your onc may refer you for a port. It is a same day surgery and makes getting chemo and blood dreams easier.
I really believe in chemo. It got me 11 years clear from initial aggressive breast cancer in 2002. Take your list of questions when you see your onc.
Hang in there.
Diana
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Liz - Welcome. When you get a chance to read some of the posts you will see that there are quite a few posters who work full time.
I can't answer the question about Taxotere but Xeloda kicked my a-- and Taxol has been fairly benign for me. It is my first foray into IV treatment also.
You will find a lot of support here and a lot of women who are willing to share their stories and their strength. You can come here and celebrate, complain, scream and it is all good.
You may not get another answer before your appointment but there are a lot of answers here for you already. We have all had our first day and we will be here for you.
Good luck.
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Hi Liz,
I was so nervous, too. I had my first chemo ever, Taxol, last Friday. For me the anticipation is always much worse and I made it through fine.
I'm new to all this but the women here are fantastic and very knowledgable. I'm still working on the learning curve but I can offer hugs if not knowledge :-)
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I'm so annoyed right now. I had a call from the scheduling people at the hospital to say that due to an over sight no appointments for chemo or clinic had been made for me past today so they at trying to find spots for me now.
For the last year I have had chemo weekly on a Tuesday at 8:30 am and an oncologists appointment every 3rd Monday at 8:30 am. This works really well for me as I start work at midday and work till 7 pm. Also parking which is an absolute nightmare at the hospital is not too bad at that time.
It looks like morning appointments are no longer an option for the next few months at least. I am being slotted in where they can find gaps so the appointments will be all over the place.
Looks like I am going to have to do a lot of shift swapping at work which I hate.
Sigh. I don't need this right now.
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shazzakelly
I feel your pain. I wonder if you can call the head of scheduling and explain your problem with work etc. I had a rude scheduler on a scan appt and i wrote a memo to the head person. Head called me and haven't had a problem. It is their oversite. I would push for what works. You are right. You don't need that.
Hope your hip is ok. When is MRI. ? Keep us posted.
My new port works great. Surgeon added additional inch to cath. I guess I have broad shoulders and kept pulling out initial first one. Boo.
Take care all. Number 6 taxol Thursday.
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Shazz, I would be a broken record with any advocate you could find, nurse, doc, admin support... persist as much as you are able in asking for priority seating. Oops, scheduling. Same thing. Long term patients deserve priority status, most of us expect to work our way up to that. Call the CEO of the hospital if necessary. Its a mistake they want you to absorb, instead of them having to redo multiple patients' schedules. If you respectfully and repeatedly say that that is not acceptable, I bet you get your slot back.
What a pain in the neck, though. Medical systems have endless ways of going off the rails now, and boy, does that enrage me. You must have zero patience, time or energy for this nonsense. You are a MODEL patient, they should have you on the cover of their annual report, for pete's sake!!!
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