Weekly Taxol for Stage 4
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Emilyinontario - No big words of advise but want to welcome you. I am sure you will find lots of answers and shared experiences here. Process, laugh, bitch, whatever. All is accepted and supported.
Hugs back - Jeanne
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EmilyinOntario - welcome!!
Shazza, I'm real interested in what you said about the ladies sitting next to you. Do you mean they got a regular dose of taxol, then come back twice this week for 2 more and continue to do that indefinitely? If that's so, that's a lot of taxol!! Never heard of, except for hearing dose dense, given every 3 weeks is real potent with lots of side effects.
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Welcome Emilyinontario. There is lots of experience here and if you have any questions someone is sure to have some advice. Alternatively, you can just come and have rant when you need one.
Wow, Alexgram! It looks like you might be coming off abraxane soon and taking a chemo long chemo break. I hope you get another year without tx like you did the first time around. If your first scan after stopping chemo still shows NED, how often are they going to redo scans to check you are doing OK?
Little rant coming. I went for my scans this morning. I had my MRI first and when I went to sit down to wait for my chest CT the radiographer followed me out of the MRI room and told me to make sure I got there at least 15 minutes before my appt next time so I didn't hold them up filling in my forms and now they were going to be running late for the rest of the day. I wish I could have thought of a good reply but I apologised to her retreating back instead. I got there 5 minutes before my appt. I had nearly finished with the forms when she came to get me - just a few boxes to check and sign my name. But rather than wait 15 secs she walked off and didn't come back for another 5 minutes. What really pissed me off was I checked the letter they sent confirming my appt and nowhere does it say I have to be at the hospital 15 minutes before my appt! I always go metal free so I don't even need to change when I get there! Rant over.
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springwatch--I don't know how often they're going to do scans. Didn't think of that. My guess is every three months, although I'm in favor of a longer interval.
I can identify with you about the amount of time to be early to scans. The last one sent me an email saying 45 minutes early and their voicemail said 15 minutes early. They don't even know.
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SyrMom sorry I didn't make myself that clear. The others in the infusion room don't always have breast cancer. I have found talking to different patients over time that us breast girls seems to get easy chemos really. A lot of the other patients with other cancers seem to do chemos that run over many hours or several days in a row.
Alexgram you have a lot to think about, but whatever you decide I hope you know NED for a long long time.
Emilyinontario welcome to our little group.
Springwatch rant away what a rude radiographer. I hope you get good scan results though. I'm keeping all my fingers and toes crossed for you.
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I hope this works because not forall but for some this will be your new favorite video -
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Brigadoon that was fantastic. Made my day. Thanks for sharing
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Brigadoon, That was such good fun. I have already forwarded to some others who might appreciate it.
My onc is on holiday so I don't have any of the details except I continue to respond to treatment and we may change the scheduling. So on with taxol but maybe not every week in the future.
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springwatch - ( I watch for spring too but I start to panic when we hit the summer equinox. So much to do and no energy or time.)
My taxol schedule is 3 weeks on, one week off. Having two weeks between treatments is very good. I haven't had many SE's - weight stays the same and I eat everything in site. My taste buds are slightly off the day after treatment. I have a few hot flashes, Muscle and joint pain is probably the biggest physical problem along with the hair, which is my biggest emotional problem
I never let myself go over two days of the big C and pop the laxative. Usually works overnight and then I have the big D for about half a day. I do get hemis but have found that if I bend over and touch my toes several times a day, it causes them to recede and the problem goes away. That has been a great boon to my well-being. I also use witch hazel on a cleansing tissue to stop itching. It burns a little but the relief is worth it. Hope you do well on it too.
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I loved the yodeling part the most!
Yep, hair loss is the biggest assault on my sense of self. I just touched up the gray roots on my very thin hair, so I know its growing, but its pretty pathetic looking now. I can see where this is headed, and its not pretty!! For women its such an insult to have one's appearance so radically altered while undergoing necessary tx. Hope there comes a time when we look back and say that those days are over, remember when...
I have walked two miles or more every day this week. There was only one really tough day, but I was dehydrated and was able to lay about all day resting and drinking water to get back in balance. One of my neighbors walks every day she can, at 9:00 a.m., and she has been a godsend. I am much more motivated to walk when joining someone else.
I have been trying to get authorization from insurance co. to get seen at Dana Farber in Boston for a review of all my test results, slides, scans, etc. It finally came through, for one visit. I will be going there on Monday to see if they can add to the treatment plan or suggest another approach. My oncologist is eager to work with them, and I am really relieved to get this chance for a second opinion. I am learning about persistence and self advocacy. My growing edge, I'd sqy!
I still want to hear more about what it means to have PR-. I read somewhere that ER+ PR- Her2- behaves more like a triple negative cancer, and in my case that has definitely been the case. Maybe I can get more info about that when I meet with DF people.
Oh, and about being criticized for perceived lateness: I have seen clients all my working life and never once put the blame on them for my schedule getting out of hand. That was really rude. REALLY!
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MameMe - I loved the whole DF experience. They are a wonderful help on insurance too. So if you end up needing more than one visit, they will pursue that with the ins. company.
I a afraid that if I color my hair the spaces will show up more. There is a good color at the health food store that is very gentle. I used it before and was quite pleased with the outcome. (I have always colored my own - I am cheap.) I wore my wig once for convenience more than anything. I do like the turbans made from t shirts though. I am finding them handy when I am doing something that I don't want to get hair all over. And they are great for cleaning and yardwork.
I am going to try to walk more. I move to the downstairs apartment in the summer because it is cooler and I noticed an immediate improvement in climbing stairs and hills because I have to climb the stairs 5 or 6 times a day.
Please ask. I am very uncomfortable with that. I have my first scans since going on Taxol on the 21st. I didn't think I would be nervous as I really want them so I can know where I stand BUT I am. Like everyone else I want only good news.
Glad you enjoyed the video - Oldel Ladies is my new favorite song. It just makes me feel good.
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I am going to go out on a limb here and say - I LOVE the steroid high! Yes, I only got 4 hours sleep last night but I have been going since 4 AM and I have accomplished a weeks worth of work. I hope it lasts another day at least.
My nephew's sister has been battling BC for 9 years. She has a very rare type. (Don't know which one) Her MO prescribes Ritalin or one of those for energy. Since fatigue is the number ! complaint I read, wouldn't you think it would be offered as an answer to the fatigue? Has anyone been offered that on here?
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Actually, my onc. said that they give that to people with fatigue, if it agrees with them. She implied it was a stage 4, quality of life maneuver and not done across the board.
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Two weeks ago, I suddenly started having vertigo and dizziness. Went to my primary care doctor, who consulted with my MO. They scheduled me for a brain MRI. Went to the MO yesterday, before Taxol #22. She said the results showed no cancer involvement. I have what is called "positional vertigo" - apparently caused by fluid build up by/around the ear canal. Now, I'm being referred to an ENT doctor. Been told there are "exercises" to do for this.
Anyway, #22 went well....even got 3 hours sleep.
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Patsback,
I got this last year following a viral infection. There are exercises which really helped but it took 6 months to clear up completely. The episodes got fewer and fewer as time went on. All I needed to do was roll over in bed to trigger them and the room would start spinning! A really awful feeling.
Alexgram, I appreciate the steroid high during the day but not when I am trying to go to sleep at night! Which reminds me I have to go take my last steroid tablet for this week.
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Well my hair is on it's last follicles and several of my fingernails have turned to paper BUT other than that, I got a lot done today!
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Well, I am en route to my consult at Dana Farber now. I am glad that Brigadoon had a good experience with them. My husband is driving, which is a big help. A second opinion will be helpful, even if just a confirmation of the current tx plan. Ihave had two weeks of no chemo now, and am starting to be more energetic. Hopeful, in that eventually I'll get back to a more nearly normal state, when oral meds begin.
Its hot amd humid out there, am so thankful for AC, and I don,t mean the adriamycin cytoxan brew, either!
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No 41 for me today. I'm thankful that Taxol has been so kind to meand feel a bit guilty when so many are having a hard time.
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patsback - I get the positional vertigo periodically. Was told it was ear rocks. Too many comments from my family to spread that diagnosis around. Hope you are feeling better now.
MameMe - I will be interested in your report on your trip to DF. Forgot to tell you about the valet parking. Hope you used it anyway. It is a great feature.
I have had an okay day. The palm of my hand burned for a couple of hours like it was on a hot stove. Kept it under cool water for a long time and then finally slathered it with a hydrocortisone dream and it gradually went away. Anyone else had an experience like that?
This group has been so quiet lately. Hope everyone is out having a good time.
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MameMe, I am also interested how you got on at DF yesterday.
brigadoonbenson, I am sorry about the hand "on a hot stove" feeling. It has never happened to me but it sounds as if it might be related to the neuropathy. Something to run past your onc when you next see them.
Shazza, I think you may be going for the record. Jennifer who started this thread went to 44, but it does sound as if you will pass this figure. BTW, just wanted to say I hope everything is OK with your Dad and step mum.
I went to my GP this morning because I developed my 4th UTI since starting taxol. On antibiotics again(!). Had an uncomfortable moment when the doctor asked when I was finishing with chemo. Reminded her I was Stage IV and she had the good manners to blush. I have also arranged to have a blood test for Vit B12 and folate levels as I am getting more tired and some of the medication I am on can interfere with B12 absorption.
SW
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Springwatch - I am embarrassed to say that I figured out the burning on my hand. The night before I had rubbed Capsasin cream into my knees because they were aching. The cream evidently stays around for a long time. Even when I took a bath last night my knees were still very hot.
Just goes to show you that sometimes we look over the simplest answers because cancer looms so big in our lives.
Didn't mean to cry wolf and thanks for the concern.
I have had 3 UTI's on Taxol as well.
The gift of the day is that there is a baby clear-winged moth feasting on my flowers. First one I have seen this year. Love them.
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Brigadoon, I had a little laugh when I read your explanation for the hot hand. It reminded me of my own "medical emergency" when I was 18 and had just started at university. I woke up one morning to find my bed soaking wet with green pee. In a blind panic, I headed to the medical centre where they could find nothing wrong. When I got back I discovered that my hot water bottle which was in a green felt cover had leaked. I was so freaked by the 'green pee' I completely forgot I had taken the water bottle to bed the previous night!
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Springwatch - Too funny. Guess we are all human.
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Had no.36 last Tues and zometa. Onc nurse said that I should have had zometa last month and it was up to me to rem to get it every three months and to diary in when next dose is due! I've been having nose bleeds - they're more irritating than anything else. Feeling very fatigued and down.
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Aoibheann - Has she never heard of chemo fog ? I am sure that argument would not hold up in a court of law. I would have been pissed!
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Hi All, I hope you don’t mind me joining in. Today I received results of a CT scan I had last week and although I had some good news, in that the mets in my lungs have shrunk, there was some progression in the liver and spine. This morning I thought I was getting my usual
weekly dose of Navelbine but that has been stopped and I will start on Taxol next Tuesday.
Since last September I have had Xeloda which landed me in hospital for 11 days on antibiotics and blood transfusions. Then after recovering from that I was put on Navelbine following spread to my liver. I ended up in hospital again with an infection. After today’s news I now feel like I’m falling apart, it has hit me really hard. I feel like I am on the downward spiral.
Are there any ladies out there who have had a few months like mine going from chemo to chemo to chemo and then found themselves stable again. I really hope there is as I want to have hope that things can get better. I’m just really, really tired of the whole cancer crap.
Thank you for taking time to read this. Carolyn
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Missy84 - I was on Faslodex and a trial drug and my Mets grew. I was on Xeloda for 10 days and ended up in hospital with uncontrollable diarrhea for 9 days. Now I am on Taxol and I will know if I am making any progress next Wednesday. I do feel better and ha e less pain in my hip and spine. There are a lot of rabbits in the hat. Keep the faith.
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Hi missy64 welcome to our little group. I survived 5 days on Xeloda before it put me in hospital I had a very rare reaction called leukoencephalopathy where it crossed over into my brain and caused complete paralysis. It eventually wore off and I returned to normal but it was terrifying at the time.
I've been on taxol since then and have had 41 infusions all without incident. It has been a very kind chemo to me and it had kept me stable for 10 months now. I hope to get a lot longer out of it.
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Hi Missy84,and welcome. While I haven't had your experience - I was on faslodex and aromisan for 3 months but the mets grew. I started taxol in Jan '13 and so far so good. I've been in hospital several times with infections, low blood counts, etc. but continued with taxol. Hang in there and hopefully taxol will keep you stable for a good long time.
Brigadoon, I felt pretty ticked off and I asked her to check with pharmacy in case someone forgot to enter it on my file last month (passive-aggressive!). Fingers crossed you'll get good news next Wednes
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I thought I had read somewhere that a side effect from taxol can be a sore throat and lately I have had a real bad sore throat have any of you had this happen or have you ever heard of that ? just wondering
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