Weekly Taxol for Stage 4
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mameme
Thanks for the website ( just in time). I am ( was) an avid road cyclist and wore caps under my helmet for sweat. I also like buffs but I have a small head and it looks funny. Lol. My scalp is tingling. Thinking gobs of hair will start falling one of these days. 💇time for a cut... Or shave.
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off to taxol number 43 today. I didn't see my usual Onc yesterday and this one wasn't so happy with the idea of me stopping Dex altogether. We had a bit of a bartering sessions when she finally agreed to drop it by half again and I said she was allowed to say " I told you so" if it all goes wrong. Not that it's going too.
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Finally got my CT scan results. MO said that there were more hot spots on the bone but that because of the regrowth in other areas that is actually a good thing because the scan is revealing other tumors that were probably already there but didn't show up because of the tumors that are dying. Same situation on spine. Tumors on liver have shrunk. I get the hard copy on Wed and will understand it better I hope.
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good news on the shrinking liver tumors. hot spots on the bone...when you understand more on what the bones are telling you let us know. anytime anything shrinks; that is good thing. *Hang in there*
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MameMe, Thanks for the link to the website. I like the idea of a scalp pad to give a bit of body under the head covering. They ship to the UK so I am going to have another look in Sept when they make their Fall/Winter things available.
Diana, Oh dear, tingling scalp. I have had that twice and each time it has been a prelude to my hair coming out!
ShazzaKelly, I hope reducing the dex dose works for you and you don't get a reaction to your taxol as a result. I have argued with my onc about reducing my premeds but he won't budge. However, I have noticed that I am becoming less and less sleepy after having my antihistamine. I think my body is adjusting to it. I cannot quite believe that it is almost a year since you started taxol! It has to be a record.
Brigadoon, Congratulations on the shrinking liver mets!! I don't quite understand about the new hot spots, unless they mean they were hidden by the now dying mets. But you do have these dying mets in the bones too and as your MO is positive, it sounds like it was all good.
It is going to be a strange week - my first without taxol since April. Normally I have tax on a Thurs. but this Thurs I am meeting with a group of friends at a pub in the middle of nowhere for lunch and a laugh. What could be nicer?
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so my infusion went without complication on the reduced dex dose. I have a little bit of nausea this evening I've not had any nausea on Taxol so far. But it is hardly anything compared to the nausea I had with Xeloda.
They were very short staffed at chemo today so I was sent to have mine in the infusion room they use for the herceptin girls so that was an interesting change of scene
Springwatch are you allowed to drive on your antihistamine? The one they use here they won't let you drive on. That was the first premed I insisted on having changed. I don't think the Onc I saw on Monday was that impressed with all the premed changes that have been made or the fact the my usual Onc (the head of the Breast team) has arranged it so I only have to have blood draws Fortnightly when it's hospital policy that that they be done weekly. My bloods have always been fine.
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ShazzaKelly
They have never told me not to drive but I have become so sleepy after my antihistamine I haven't even tried. Until about 4 weeks ago, I always fell asleep during my IV for about 20 to 30 minutes. However, I have not slept for the last 4 weeks. I feel like my body is adjusting to it. Normally, I drive to the hospital and my daughter drives me home.
My onc is against any changes in my premed after an incident with another onc whose patient had an anaphylactic reaction after they changed her antihistamine. She was alright but I think it frightened the sh!t out of some the medical staff.
I have bloods drawn every week. Full blood counts, liver enzymes and U & E (urea and electrolytes). Never been anything wrong with them apart from the Hb which has been gradually falling away. It is usually a little below normal by the time I have my IV but as I am usually at my worst a few days earlier it is probably very low about 3 or 4 days after the IV.
Edited to add: I have read that abraxane is much better tolerated and doesn't need the level of premedication that standard taxol does. It seems the problem is not the taxol itself but the medium in which the taxol is dissolved.
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Had #33 taxol yesterday, all went o.k. except my tumor marker went up again. Freaked out cause Monday are the scans & 2 weeks later my daughter's wedding. Really don't want progression hanging over my head right now! So, will know more Monday afternoon. Of course the MO will be out of town too, just to make matters more anxiety producing. I'm thinking if there must be a change in tx I'll not do anything until after the wedding - that will be about 3 weeks off.
Shazza, glad your Onc is the head of the breast team; sounds like he knows you best anyway. Let them "fight" it out between them! The decadron dose can affect nausea as I understand it, as some pt come in for fluids and decadron at my place when they are having nausea problems. I would just want to make sure a reduction wouldn't cause any intestinal inflammation issues and start another problem - ulcers or whatever.
I don't like change!
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SyrMom, Good luck with the scans on Monday. It is so stressful waiting for the results afterwards. You have your daughter's lovely wedding to focus on. I'm hoping you'll be so busy that you will forget about the scans at least for a few hours every day.
I agree that postponing a change in your chemo, if needed, should wait until after the wedding. You don't want to be dealing with a whole new set of SEs with so much going on in your personal life.
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I thought I would share the view from the garden of the pub where I met friends for lunch today. The weather was warm and we had a lovely time.
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Hi taxol peeps
had my head shaved this morning; actually needed it shaved two days ago but my hair gal was on vacation. i am glad to get rid of the "dead hair" (just like the dead cancer cells
) at any rate, it was uneventful for me. 12 years ago at first dx i was totally crying my eyes out...this morning i was actually just glad to get the hair off. Springwatch what a pretty picture. so calming. Syrmom good luck on the scans. this disease is so stressful at times. geesh...give us a break*
shazza, my onc said the decadron also prevents allergic reaction; she said i can stop the oral (20 mg night before) but Never on the infusion. she said 'You don;t want an allergic reaction to taxol' i hate the downer after...in 48 hours i am sad and feel hopeless after being "high" for two days. i think i am kinda getting used to this; july was my first round; so i journal side effects every day so i know what to expect as i continue treatment.
the repositioning of the port has taken hold; my port is finally working like it is supppsed to. stitches are still in and will remain another week. the steriod is slowing the healing process down. boo hoo. and so far, the kidneys are working; i see kidney doc 1 x a month and have kidneys scanned every two weeks. i do NOT want those nasty stents...so i pray every day that the chemo is working.....for all of us.
hang in peeps/
diana
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SyrMom good luck with the scans on Monday. I'll be keeping my fingers and toes crossed for you. I'm looking forward to hearing all about the wedding. My youngest has her first School Ball on the 9th it's been all go with finding shoes, choosing a hair style etc. I can imagine the organisation for a wedding is far more full on.
Springwatch the view from the pub is gorgeous. Wish I was there
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I live in a valley called the Coachella Valley. Palm Desert is the green area behind the mountians. The desert is actually very pretty and spirtual. I love it here.
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Diana what a beautiful picture. Nothing but fog if you look out my window at the moment so I won't post a picture.
I finally went and got fitted for a prosthesis and bra after having my implant removed in May. It's nice to be balanced at last. But boy I really had no idea what bra size I am. It was a little embarrassing to say the least.
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I had taxol #40 and ct scan on Tues. Still awaiting results. Onc said he may change chemo because of SEs. I'm in a funk because it's been keeping me stable and I'm not sure if SEs are bad enough to change. I wonder if I complained too much to the nurse... I try to answer their questions honestly, It's difficult to judge what level of neuropathy and fatigue is too much and what is bearable. He said he was worried about long term damage (ha ha). I'm scared to move to something worse or that will allow progression. He mentioned hormonals but they didn't work for me first time round. SyrMom, I'm with you. I hate change.
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Aoibheann Good luck with your scan results too. I'm with you on hating change. I pretty much want to stay on taxol forever. Too scared of how another chemo may go. Especially after my short time on Xeloda. I think I'm due scans after this cycle finishes. I'm coming up to a year with stage 4 on the 9th and then a year continuos Taxol in September. Can't believe how quickly the years gone.
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As usual, thanks to all of you for your continued support. Trying hard not to freak out or let what I think I'll be told Monday put a damper on the wedding. Would so like to enjoy it, despite other mitigating factors present (a/k/a toxic people). Had I not agreed to the taxol last September, I most likely wouldn't be attending the wedding now; so I am grateful for that!
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Syrmom,
Good luck on your scans , i hope you 'll attend the wedding and enjoy it.
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Thanks, Woody! As long as I'm walking & breathing, I'll be at the wedding, thanks to taxol!
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Diana, That view is inspiring! What time of year was the picture taken? It looks like summer to me but I am probably wrong.
Aoibheann, Good luck with your scan results and I hope you can stay on the taxol along as it is still working. My onc has discussed the neuropathy with me and as long as there is variation in the symptoms, some days worse than others rather than an overall worsening, he isn't going to be too concerned.
SyrMom, Fingers crossed for tomorrow's results.
I had hoped to enjoy my week off taxol but I have yet another UTI, my 5th since starting taxol. They have given me a different antibiotic this time which unfortunately has upset my bowels so I can't be too far from the toilet. Then this morning I woke up with a sore throat, blocked nose and swollen glands. Just perfect!
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Springwatch, hope you're feeling a bit better. Bad enough to have the UTI w/o the 'extras'.... It's adding insult to injury. Can you take probiotic yoghurts and drinks? I think they are supposed to help your tummy fight these infections/recover from antibiotics. I'm watching the finals of the CW games here and we're having a similar day to Glasgow - rainy and chilly, so if your weather is anything like that I hope you are snuggling in bed with a hot drink. Take care of yourself and wishing you a speedy recovery
Syrmom. fingers crossed for you tomorrow that all will be well
Scan results are stable! Onc has disappeared into the mists and no one knows if he's going to change my treatment or not. I wish I knew...Also if treatment changes can I go back to taxol at some point in the future? I'll try to see him in his rooms but he seemingly prefers to see patients 'in treatment' in Daycare Onc.when he's too hassled to talk. V. frustrating
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Aoibheann great news that you are still stable. You've got a fantastic amount of time from Taxol so far. Hope your Onc makes a appearance soon to explain things. Here I have an appointment with the Oncologist once every 3 weeks the day before chemo. They won't do Clinic and chemo on the same day.
Springwatch so sorry to hear you are feeling under the weather. That's no way to spend your chemo free week.
SyrMom fingers crossed for your scans and good results. I guess it's all gearing up for the wedding now in your family.
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Thanks to all of you for your ongoing support. Right now I'm not even rational, so I will say as little as possible. CT showed progression, a new liver lesion and the rest grew! Don't know what the next tx will be, but there's talk of AC, which I probably will decline. In fact, I may decline anything else. At least I should feel half way decent for the wedding with no chemo.
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SyrMom I'm so sorry to hear about the progression. I wouldn't start anything new now till after the wedding. A couple of weeks off won't really change anything and at least you will feel good for the big day and it will give you a chance to think about your options. Big cyber hugs to you. This is not the news we wanted to hear.
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Syrmom. Thinking about you. Like you said maybe you will feel half way decent for the wedding. Keep us posted on what onc has to say. I hate breast cancer and what it does to us and our loved ones.
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SyrMom,
I am so sorry to hear about your scan results. You must be so disappointed,
I agree with ShazzaKelly, wait until after your daughter's wedding before making any decisions about what you want to do next, Waiting s couple of weeks isn't going to make much difference,
Enjoy your daughter's wedding and speak to your oncologist afterwards about what you want to do next.
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Aoibheann,
Pleased to hear that you are still stable on taxol. I hope you get to speak to your oncologist soon and sort out what is going to happen going forward.
My finger nails are holding up well but my toe nails are not so good. One of them has fluid oozing from underneath the nail and it looks as if I will lose it eventually. Cleaning it with antiseptic whenever I can but I think it is a lost cause.
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Thanks everyone. I'm still really upset, a cross between anger & despair. We lose so much with this rotten disease.
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SyrMom, I understand. Hugs, SW
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Syr, its such a tough road, this. I am so sorry to hear of this recent progression. I wish we had great big fields to go to, with teams of supporters, where we could rage and scream and pound it all out, with encouragement. No one saying," Well, it might not be so bad... " or the like. Just pure empathy for the outrageous nature of this disease, and our absolute right to express our grief and fury. Somehow I feel like with that, I would stay centered more, and not get sucked under so much.
Brigadoon, how's things? Pretty quiet over there in Vt!
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