Weekly Taxol for Stage 4
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Hi Marian
I got extensive bone mets in February this year, 2019......when I became Stage 4....I have had surgery for a shattered vertebra, there were two other fracture vertebrae, plus radiotherapy and have now done 3 Taxol sessions but each one is worse afterwards. Even now my tumour markers are still totally normal.
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Lily, since I am really liking this thread and everyone who is posting, I decided to go back a few pages tonight. I saw some of your history and I am so sorry that you lost your husband to cancer and very quickly. As for your post above, the last months have been really difficult for you with what is happening with your bone cancer. It could be the same for me with our so similar stats that I mentioned earlier. I am really glad to see you posting here. I am not too worried about my TM's as yet. Only if they jump again in a month will I wonder.
As some of you know, I led treks in Nepal up until 2 years ago in May when everything went sideways I guess one could say. I also rode my bike a lot though I was not good by any means but it helped me train as I had a bad knee and ankle and cycling is good even when one has joint problems. When I lost the use of my right hand over the 1.5 years since mets I lost all the physical abilities, at least many including cycling. I bought a new bike almost a year ago but because my husband was off sailing I never really was able to practice using it one handed and the times I tried were terrifying. The bike was put together with everything on the left but stopping with only pressure on the left made me scared I would fall when stopping. I posted on a local site this week and a woman who teaches cycling and also works at the same shop I bought the bike at suggested we use velcro on my right bike glove and wrap the other side of velcro on the grip. She also volunteered to do it and today we went and tried it out. I was successful with the grip holding my hand in place and with my thumb that still kind of works. I did a few tries and though no hills and slow, I managed. She will work with me this week for an hour and we will see. But I felt so good having a possibility.
Lynne, I so much appreciate your posts too.
Happy Easter,
Marian
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Today was Yaxol infusion day. My blood counts were good. My hemoglobin isn’t dropping too quickly since the transfusion, so that is good news. Of course it is not normal, but it is better than it was. The other good news is that my TMs, CA 27.29, dropped another 350 points. It is still 1444, but it continues to decline from its high of 2900+. My MO is encouraged and told me I am doing well. I sure hope that he is right.
As I have said previously, I usually wear a wig when I go out. I have heard that wigs can be hot in the summer, so I bought an halo to wear with hats as well as a scarf. Let me tell you, I do not have the gift of scarf-tying! I followed instructions that came with the scarf as well as some on the web. I managed to accomplish two looks. If I had a parrot sitting on my shoulder, I would have been mistaken for a pirate with one attempt. The other one made me look like a woman from the 50s who tied a scarf around her head to cover up her curlers. My dh and I did have a good laugh at both tries. Luckily I have 2 pre-tied scarfs that I bought while my hair was falling out.
My other recent adventure was a journey into creating eyebrows. Mine are very, very thin now. Sooo, I found a great video on Pinterest. Wow, the instructions were clear, and it looked pretty easy. I bought the necessary supplies and went to work. When I had finished, I went downstairs to show my dh. I told him that if I added a mustache, I could be mistaken for Groucho Marx! Again, we laughed, but he insisted they weren’t that bad. HA! Believe me, they weren’t just bad, they were also hilarious. I will try again soon, but for now these skinny-mini browsare just fine.
I wish good news, no pain, and no SEs for all of you. Thank you for being here for me. It makes me feel less alone with this treatment.
Hugs and prayers from, Lynne
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I just survived 2.5 days of 5th grade outdoor school. I pooped but so glad I was able to go.
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Well done!
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Lynne your post are such an encouragement to me! Your humor and positive attitude make me smile. I will have my 6th round of taxol this week. Praying for you 🤗.
Michell
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I had my second week of my three week cycle on Thursday and then a nerve block on Friday so I had a lot of steroids. I have been feeling really good and my blood work was excellent. I will not have my tumor markers done again until middle of May and it is not bothering me despite the jump from from 32 to 41.5 not long ago. I got called for a booking for a bone scan on Tuesday but I am going away for three days, leaving tomorrow so I await another appointment. I am going to one of the islands close by Victoria with 2 girlfriends and we hope to do little hiking, play some games and all I am doing is providing the accommodation so it will be easy for me. Where we keep our catamaran there are four old A-frames that we members can rent. We have the best one for two nights overlooking the inlet and the weather is good so I expected to be a fun time.
Hope the weekend has been good for all of you.
Marian
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Have a wonderful time Marianne, sounds lovely.......and thank you for your kind post to me earlier on this thread....
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Just returned from a wonderful vacation in Hawaii with my hubby and kids. It was my off week, and so thankful I was feeling good and nice to get away from all things bc related for a week. As soon as I got home Friday, it was scan time. Last scan in February showed possible progression, but it was questionable so we decided to wait 2 months and scan again. I'm so thrilled to report, that there was no progression and I continue to be stable with continued mild shrinking in my liver lesions. So here I go...onto month 9 on Taxol/Gemzar. I feel so blessed that I tolerate this chemo regimen so well, and am praying every day that I can stay on this as long as possible.
Lynne...I lost my hair last fall just as the weather was cooling down. During my trip to Hawaii, my first experience this year with warmer weather, my head did get hot with the wig. Ugh...not looking forward to the hot weather with my wig this summer! I have no eyebrows, and creating them has been such an adventure for me. I use a stencil and brow powder which works pretty well, but what a challenge it's been creating eyebrows that come out even. without one higher or lower than the other! I then decided to cut bangs into my wig, bangs long enough to cover my eyebrow area, so when I get lazy I don't even do the eyebrows, and I don't think anyone can tell the difference : )
Hope all are doing well and staying as SE free as possible on Taxol.
PB
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pboi, that swooshing sound you hear is me with my pom poms cheering your good scans! How wonderful you were able to time a nice family getaway. May I ask where you got your wig? I've been getting away with a handkerchief and baseball cap, but need to expand my repertoire.
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Today I went for my 4th chemo but the oncologist refused to do it saying my legs are too swollen and inflamed. I can´t wear normal sandals or anything. She said it made no sense that I had pain after chemo.......but of course it seems a common reaction. I am going to have a blood test in two days then go back next week to see what they decide to do...she also said it seems i am better when i dont have treatment than when i do.....I said i think the treatment is working and that the pain is just showing that but she was not receptive to this.........
Also kidney function tests were not normal as shown on the notes for today....
Feeling fed up really.......I asked how long treatment would be if they revert to it and she said depends on how it goes........so many unknowns and no idea how they even check to see if the treatment is working, no scan has been mentioned
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Jaylea...good to hear from you : ) How are you doing with your Gemzar/Taxol? Are you almost done and scanning soon? Prayers that you will have good scans too! I got my wig from wigs.com. I have purchased 2 wigs from them and had good experiences with both. I first lost my hair with ACT chemo back in 2015 and purchased a synthetic wig, which is cheaper, and did its job. But I was often self-conscious with it on. This time, I splurged on a human hair wig. I love my wig and feel good about myself wearing it. Be sure to purchase when they have a 30% off sale, which from the ads I get, they appear to have a sale every week...lol!
Lily55...So sorry the Taxol is giving you trouble. Hopefully, the next blood tests turn out well, and you can resume treatment. How very strange, they your providers have not told you when they will scan you next. From my understanding, when starting a new treatment they scan after 2-3 months to see if the treatment is working, because if it's not they need to try something else. I don't know what schedule of Taxol you are on... perhaps they haven't mentioned a scan date yet for you because you do need to have completed a certain number of Taxol treatments and give it time for it to work before they scan to see results. Perhaps this pause in your Taxol treatments is the reason they don't know when you'll be scanning next? Just my two cents. Hope you have some answers soon...hugs.
PB
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Hi Lynn Since we started Taxol the same week, I'm wondering if you've had your first scan yet? I have my first Ct and Bone scan scheduled for this Fri. I'm not worried about this one. The pain In my spine from mets has been gone for weeks(taking that as a good sign) and my breast tumor is noticeably smaller and way less hard than it was. Also, the skin mets have stopped spreading these last three months. (They were growing fast) I have pictures on my phone. If you'll remember that was the reason for starting Chemo. My ONC was worried about the skin mets ulcerating. So hoping for good news. Praying for the same for you. Sue
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My blood counts were too low today, so I couldn't have chemo. I was told that I can't have it next week either, and I will resume treatment in two weeks but at a reduced dose. I found it ironic that my counts were better when I was having treatments weekly. Now that it is 3 weeks off and 1 week off, my counts are down. Oh well. I am not happy about having to delay chemo, but I know things could be much worse. Just think of how much energy I will have two weeks from now. I will be like that Energizer bunny in the battery commercials.
Marian, You are probably on your trip today. I hope you are having a great time.
PB, I am imagining myself in Hawaii right now. We have had so many cloudy, rainy, and cool days here lately that a trip to Hawaii sounds more appealing than ever. It is wonderful that you had such good scans when you returned home. WOOHOO!
Jaylea, I hope you find the perfect wig. Many people don't like them, but I think that my wig looks better on me than my own hair did.
Lily, I am sorry that your experience at your last appointment was so negative. You deserve to get explanations and answers. Treatment plans sometimes have to be changed due to our bodies' reactions to them, but we still have the right to know what that plan is. It seems reasonable to believe that your onc knows how long she would keep you on Taxol if you respond well to it. We all know that the plan might need to be adjusted, but I, for one, would want to know the strategy. My experience is that treatment decisions are easier to swallow if I understand the thought behind the decisions that are made . I understand why your onc would not want to take a chance of compromising your kidney function, but she should tell you that if that is the issue or if there are other issues of concern. Has your onc discussed a reduced dose? If she truly believes that you are better when you are off treatment than when you are on it (a truly odd thing for her to say), why isn't she considering whether or your are on the wrong treatment or if you need a reduced dose? I think you should write down all the questions you have, and make sure you get sufficient answers to them at your next visit. Can you get a second opinion from another oncologist? It sounds like your current onc does not suit your needs.
Sue, I have not had scans since I began taxol. To be honest, I am in no hurry to have them. I think that taxol is working for me. My TMs continue to drop, and they have been accurate for me. I feel good. I have not discussed scans with my MO, but I assume he will schedule them for sometime this month. It sounds like you are responding well to taxol. I hope the scans will confirm that. You are in my prayers.
Leftfoot, 2.5 days of 5th graders sounds exhausting. I am glad that it was a good experience for you. Have you fully recovered from the experience? Haha.
Rt, Where did your post go? I hope we hear from youagain soon.
Hugs and prayers from, Lynne
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Lynne...perhaps your counts are lower now vs when you were on weekly taxol just because you've been on taxol longer? I know the longer I've been on chemo, my counts have dipped a bit vs. when I first started. I'm envious you get two weeks off : ) but hope those counts come back up soon so you can resume treatment.
Went to the MO today. When I was first diagnosed with liver mets, I had a huge liver lesion and my liver was in bad shape, so it was Taxol/Gemzar for me. After 8 months I've reached stability, my MO says my lesion has shrunk enough and liver enzymes now normal, that I can drop the Gemzar and move to weekly Taxol, 3 weeks on, 1 week off. Makes me nervous to go off the Gemzar as it's been working for me, but it's toxic to be on so much chemo, and better for me to go to weekly Taxol, so here I go!
Marian...hope you're having fun on your trip. I had so much fun on our trip to Hawaii...time to plan the next trip : )
PB
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PB, You are probably right. It does make sense that blood counts would be more severely affected after being on chemo for a while. I think that my counts will bounce back in two weeks. I have to admit that I don't like taking the longer break, but I know it us for the best. I think it is good that you can stop taking Gemzar now that you are stable. Since it has not failed, it can be kept in the arsenal in case you need it down the road. Taxol works well by itself, and I hope you continue to experience good results for a long time.
My DH and I went to our grandson's track meet yesterday. It was chilly and cloudy outside, and I looked like I was dressed for the middle of the winter. I did I stay warm. Those track meets are long, but they are fun to watch, at least at the middle school level.
Sue, I will be thinking of you tomorrow as you have your scans. Do you know when you will get the results?
Hugs and prayers from, Lynne
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Hi Lynn, Thanks for the support for tomorrow. Not sure when I'll get results but, I have a reg ONc apt on Wed. so I imagine that I will have to wait till then. Unless, lol.. I call the office and bug the nurses. The fact that I can see the results is just so darn encouraging, Praise God.
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Smokey I will be thinking of you tomorrow as I have a scan tomorrow as well. Here is to great results.
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Leftfoot, I will be thinking of you along with Sue today as you have your scans. I hope you have good results and don’t have to wait too long to get them.
Hugs snd prayers from, Lynne
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Left foot and Lynn, It truly helps knowing you guys are out there and understand what I"m going thru. I as well, will be thinking and praying for you Leftfoot. My scans start at 9am CST.
When I first woke, this a.m. while waiting for coffee, this is what I heard on the news. There were two teenagers (or early twenties) stranded in a boat out on the coastline. They were both praying for God to save them. The girl said a shadow crossed over them and when she turned around there was a hugh boat headed towards them.. They were getting rescued! When the boat got closer the name on the boat was "Amen". wow. This is all over national news. That immediately picked up my spirits.
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Sue and Leftfoot...thinking of you both today, and praying for good results! Hoping the results come fast too. I had mine done last Friday and the wait over the weekend was hard...retail therapy got me through it though : )
PB
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Lynne and Pboi, I did go on my little get-together with two friends and we had a great time. There were storms prior but the sun came out for our whole 3 days. Ambling hiking along the ocean, great food cooked by them, not me, lots of games and conversation. We stayed in a very basic A frame on the grounds of one of the out stations of our yacht club wth a view of the inlet. One friend forgot bedding but luckily I am an overpacker when I have a car.
I returned for pre chemo blood work and had chemo yesterday, last week of Cycle 6 and will be continuing. My Hg was 122!!! No wonder I have been feeling so good. Lynne, so sorry about your and hope with the break, that yours perks right up. What dosage of Paclitaxel are you on, can't remember.
Snooky, I like the news story you related. Snooky and leftfoot, When do you get your scan results? Pboi are you waiting for scan results too?
Hoping for a good weekend for all of us. My husband and I are signed up 1-3 tomorrow for a group through our museum to learn about and to remove invasive plants in a local plants.
Marian
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Marian...I got my scan results already this past Monday. Was on Gemzar/Taxol and all lesions stable with some mild shrinkage, so will be stopping Gemzar and moving forward with weekly Taxol only.
PB
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Well, surprisingly, I have my results! They came thru on Follow my Health.. It's good news mostly.
Bone Scan states--- I had just 4 area's, now there are a couple more spots, and the older areas are not showing shrinkage. But, my spine is a mess with arthritis, Osteoporosis, and two compression fractures. Remarkably there's no pain.
Now it gets better.. CT scan-------I had very small lung nodules, found July 2018, and during F/Ibr they multiplied. BUT, with the toxal, the report said that most of them are now not showing up and the ones that do are remarkedably smaller!!!!!
The breast tumor---was 4cm 7/2017 and on hormonals it grew to 5.85. Now, with just 9 infusions, it's 2CM Yes!!!! I had bc in the axillary lymph node only and now too it is half the size that it was.
While on hormonals a second breast tumor started. Not a solid mass. It was cribform in situ, but it had started growing thru my skin forming nodules. It was growing very fast. That was the reason for the toxal treatment to stop it from possibly ulcerating. While, using pictures, we knew that the nodules had stopped growing thru my skin. The CT report said that the group of nodules insides my breast were less and there was less breast thickening. my ONC had said that the out tumor would heal from the inside out and it appears to be what's happening.
Next, appt this Wednes.
So, I'll take it!!!! Praise God, and thank you all so much for thoughts and prayers.
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Sue, I will concentrate on the good news and send you a big WOOHOO! I hope the improvements continue.Bone mets can be a bit difficult to track sometimes. Scans do not always accurately identify healing, especially early on. I am glad that you received your results so quickly.
Hugs and prayers from,Lynne
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Thank You Lynne, And thank you for the info on bone scans. I did not know that. Whoohoo.
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yay Snooky! I will get my results Wednesday. I hope to havecsimilar good news. I am so glad taxol is working for yo
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Yay, for good news Sue!!! Hoping for good news for you too this week Leftfoot.
Hope all are having a great weekend : )
PB
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fantastic Snooky!!!
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Snooky (Is it Sue?) thank you for giving us both kinds of news, and as Lynne says, concentrate on the good news.
Lily, thank you for good wishes last week. But I wonder if it is this week you go back to your MO to discuss the bloodwork and any further plans? I think of you and what you have so recently faced and suffered through.
I have a bone scan tomorrow, about a year since the last one. I also see my endocrinologist this week, also a year since I last saw her. I have questions about Prolia which I have been on for about 3.5 to 4 years and plan to call my previous doctor in Vancouver to verify that. Other than that I look forward to my week off Taxol. My husband leaves early tomorrow for 2 weeks in the north to help our son work on his starter home before he starts his first job as a graduate nurse.
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