Weekly Taxol for Stage 4
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Jaylea, Has your MO returned and reviewed your scan results? I am glad that you are feeling better.
Leftfootforward, I am amazed that you have been able to continue weekly taxol for such a long time. I have to admit that I wish I could do that, too, but as I have said, I am now on a three week on/one week off schedule.
On Tuesday I had my second infusion at the lower dose of 108 mg. It was uneventful. My wbc and anc were within acceptable limits. My hemoglobin is still dropping and is back down to 8. If it is lower than that next week, I will have another transfusion. My CA27.29 was up about 70 points. Since it is over 1500, an increase of 70 is not really significant. I had hoped to see a big drop since it has been a reliable sign for me, but since I was off taxol for 3 of the previous 6 weeks, the lack of a drop was not that surprising to me. I have to admit that I am not a patient person, and I want to see immediate and continuous good results. I know how unrealistic that is under the circumstances, but I can dream. I feel good, so I am happy with that.
I hope everyone is doing well. I enjoy reading about and learning fromyour experiences. It reminds me that I am not alone.
Hugs and prayers to all of you from, Lynne
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Yes, 50sgirl, I met with my MO yesterday. She confirmed my 'mixed results' theory. Lung and liver mets are significantly lower, but there are several new bone mets. So of course that means no more taxol / gemzar. I had expected a short course, but was prepared for more if it was doing the job. The options for next line were Xeloda or Halaven. But Xeloda, being oral, requires a stable GI environment to metabolize. Since I'm GI compromised, she was concerned it wouldn't be as effective. So Halaven it is. I am mildly concerned that I burned through the first line chemo (taxol/gemzar) and am on to second line (Halaven) so soon. But she did say I should tolerate the Halaven easier than the taxol/gemzar. It's 2 weeks on, 1 week off. Only one premed for nausea, but from what I can tell nausea is mild and intermittent.
I hope everyone is doing well and looking forward to a nice long weekend surrounded by friends and family. Hugs~JL
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50s girl. Have you check your iron counts? My anemia has gotten better after several infusions of pure iron. Turns out I had 0 iron in my system so that caused my anemia. I’m still anemic from treatment but it’s not as bad. I’m back up to 8. So I avoided s blood transfusion.
Jaylea- I hope the next treatmrnt works well for you.
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Jaylea...so sorry the Taxol/Gemzar didn't keep the bone mets away. Praying for you that Halaven will knock all those mets away!
PB
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My Echo results are normal so I'm scheduled for port placement on June 3rd. I'm very much looking forward to it as I have developed bruising on my arms from the IV sites. I received 2 Taxol infusions so far and 1 H+P. Due to the steroids I have not been sleeping well post chemo nights and feel very shaky. My MO said she will be tapering the steroids as treatment continues so this should get better. The loose stools are quite annoying, I wouldn't call it diarrhea but I feel like i have no control when using the bathroom (a little TMI). I am still working but this is also difficult as I have periods of fatigue where I feel I can't function. I didn't think I would feel this way after only 2 treatments but as I continue to read the posts I see that everyone has a different experience. I am hoping to enjoy this long weekend til my next infusion on Tuesday.
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Steph, never TMI here. I would say mine is similar. I had my 113 mg of Paclitaxel yesterday afternoon and around 10 PM it was a bit of a rush to Brand same again this AM. I love my Power Port and hope you do too.
Jaylea, I just read your post and with Halaven there may be a small silver lining if you can tolerate it better.
I had my second lowered Taxol dosage to 80% so 113mg yesterday and tolerated it well. Thought of you Lynne too with your lowered dose. One more infusion next week for Cycle 7 and onwards. I have had worsening hand pain and right ankle bone pain but see my pain doctor this afternoon so we may up the Metal a bit. My last nerve block did very little and the net one is June 7 so we will discuss that too.
I have been feeling mentally good which is a big help.
Marian
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strong- your experience sounds very similar to mine. I have to time meals friending on if I am going out or working etc. this hasn’t been my favorite set of SE to deal with but the meds are working so I will live with it.
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Leftfoot, I have been tested, and I have plenty of iron in my body. The problem seems to be in my bone marrow. Cancer is interfering with the efficient performance of bone marrow. I am not producing enough red blood cells, and many RBCs that are produced are released before they mature. Once cancer is under better control, the situation should improve. In the meantime, it is manageable.
Jaylea, I am sorry that you are moving on from taxol/gem are, and I do hope that Halaven works well with no serious SEs. Please let us know how you are doing.
Steph, I think you will like the port once you have it. It is nice to skip multiple sticks for blood tests, etc. I have only had mine since January, but I have had no problems or pain from it. A reduction in steroids should certainly help to relieve your sleeping problem as well as the shakiness. Hopefully the loose stools are only temporary or infrequent.
Marian, I am glad you and your pain doctor are trying to work out a solution for your hand and ankle. I hope you find something effective. Next Tuesday I will have my “reduced dose” of taxol, then I will have a week break. I have to admit that I had more or less easily adjusted to the weekly schedule, and this break business feels funny. I am NOT complaining. That week off is appreciated.
Hugs and prayers from, Lynne
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Today was chemo day. I continue to feel good. I am happy that I have not had the SEs I had expected. My hemoglobin is down to 7.5, so I will have a transfusion tomorrow. I am looking forward to getting back some of the energy I have lost.
It is a rainy day here today, but I can't complain. It was sunny and warm all weekend.
Lily, We haven’t heard from you lately. Are you continuing with Taxol? If yes, is it the same dose? Have you moved on to something else?
Hugs and prayers from, Lynne
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Chemo day for me too today. Next week I'll be starting my 10th month of Taxol, and thankful overall I'm feeling good. Although...I feel like neuropathy has slowly started to creep in this past week, with some tingles beginning in my feet. Grateful I've avoided this so far...ugh but sad its showed up. Was extra vigilant about changing the ice more frequently today in hopes it might help.
Lynne...hope the transfusions gives you an energy boost tmr.
Hope everyone is doing well too!
PB
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Hi Lynne, I have been too unwell to post and have decided I am not going to continue with this current dosage as I can't do it. The fatigue, not being able to eat or even drink on some days has been horrendous.... some days I was unable to get out of bed due to lack of strength. Am waiting for blood results and I anticipate poor kidney and liver results..... But I have made the decision to insist on a change in dosage, interval between treatments or a different treatment regime.
I have never been like this where mind over matter doesn't work.....so next week will be challenging to put it mildly....
I posted on the other Taxol thread earlier but no way can I carry on with this......
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Hello Ladies Haven't posted lately been on a roller coaster of emotions. I believe that I did post my ONC wanted me to see a RAD specialist about the cancer in my t10 an area where I also have a compression fracture. At the first consult, the specialist said he had three Radiologists read that Nuc Bone scan and all said what they saw was healing bones. But, lets do an MRI to see what's going on in there. Well, 2 days later results of MRI showed mets! I was dumbfounded. Dang scans. So, I'm getting things started to have the radiation for my T10 started. Stimulation June 6th.
Onc also, wants to stop Xgeva and start ?( the name eludes me, it's the iv bone one). But he doesn't want to stop Taxol. I do not understand that. True, it's working on tumor in breast and the small lung nodule are cleared up but, don't understand about the bones. Having infusions every other week is helping my depression somewhat.
I've had 11 infusions so far and now my veins are really taking a hit. Blew a vein last taxol infusion. Scary stuff. They are talking about me getting a port. It was never discussed before.
Really am glad everyone here is doing ok and adjusting.
Lily, I feel so for you. I cannot imagine the ONC not listening to your complaints. Are you in the US?
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I love my port Snooky and had one also with my first go with BC in 2012/13. Lily I hear you about insisting on a change and it may be that your doctor readily agrees given how horrendous you feel.
Pboi, you are a couple of months further along with Taxol. Tomorrow is the end of my 7th cycle and cross my fingers no neuropathy as yet. Also my Hg remains good unlike you Lynne. Mine only dived once back in 2012 when I was on dose dense Doxyrubicin, the red devil and it went to 6.4 and I had a blood transfusion then. It was an awful feeling and I feel for you.
I have had really bad right bad right ankle bone pain for 2 weeks but saw physio this AM and it was physio related. Phewww!
Jaylea, let us know how the Haleven has gone.
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Pboi, it is unfortunate that you are having symptoms of neuropathy. I hope it doesn’t become severe. Perhaps a reduced dose or different schedule would help lessen the severity or at least help it from getting worse.
Lily, I really don’t understand why your MO is so insistent about keeping you on your current dose and frequency. It is obvious that your QOL is being threatened by the current strategy. No one would be willing to continue down that course. Does she think it is better to risk stopping treatment rather than making the change? Of course not because that makes no sense. You, as the patient, should have input into the course of your own treatment. It is your body. Your medical team works for you, not the other way around. I hope you are able to change the dose and/or frequency. If your MO refuses, it is time to get a second opinion. You are in my prayers.
Snooky, What a crazy course of events. It sounds like things are finally under control, and you can start rads relatively soon. I hope your MO will clarify the reasons for staying on Taxol. Perhaps she feels that the radiation and the switch from Xvega to Zometa will take care of the bone Mets. Maybe she thinks that bone Mets react more slowly to treatment and that results might still be seen in the future. Maybe she feels that Mets in lungs and breast present a more serious risk than bone Mets. I am surprised that you have gone this long without a port. I have heard that Taxol is tough on veins. My veins were too small to be used for Taxol, so I had a port installed before the infusions began. The port surgery was very easy. I flew to Disney World the next day. I am glad to have the port. About the Zometa, here are a few suggestions to help avoid feeling achy and yucky from it - make sure you are well hydrated, make sure the infusion is set to take at least 30 minutes, not 15, take Tylenol or Advil on the day of and day after infusion, some people take Claritin, too.
Marian, I am glad that your ankle pain was physio-related. Our minds always go right to cancer when we feel something irregular like pain, right? It is always a relief when it is something else. I admit that this anemia is a nuisance, but I feel blessed that anemia is the only thing that is bugging me. I had my transfusion today. I can already feel the difference since I was able to walk up the stairs without feeling short of breath. Of course the Benadryl I was given has made me feel tired, but that will wear off. ( I got hives from a transfusion years ago, so now I have to take Benadryl and Tylenol as premeds before transfusion.) I have a busy few days ahead, so it is good to know my energy level will be improved. I hope you continue to be neuropathy-free.
Hugs and prayers from, Lynne
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Currently waiting in Emergency room as primary care doctor sent me here for serious anaemia. The blood test also shows 15.3 marker has doubled and is now above normal.....this has never happened before not even when ok had 5cm of tumour so now it seems the chemo is stimulating the cancer.....
I am definitely not continuing with her program.....
Thanks for your lovely reply Lynne
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Oh Lily, I am sorry to hear about the latest developments. Please let us know how you make out in the ER. I am also interested in learning what the new plan will be for your treatment. I am pulling for you.
I actually have some energy today. I can’t believe the difference a bunch of red cells can make. For the last fewweeks I have been dragging myself around, huffing and puffing. Now I feel human again. I have a big list of things I want to do before this transfusion effect wears off. Now I just have to pace myself. I feel soooo much better. I am almost giddy about it. How ridiculous is that?
Hugs and prayers from, Lynne
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Snooky, sorry to learn about new mets. As 50sgirl pointed out, there may other reasons for your MO to continue taxol. My MO said Taxol is every effective in reducing liver mets but I don't know if it will help with my bone mets. I guess we are hoping the bone mets will remain stable due to Taxol. So for you, your MO may be focusing more on other organs than the bones. Hopefully radiation would help.
Lily, sorry to hear about so many problems you are going through. Hopefully they can start a new, tolerable regimen for you. Could it be possible that the chemo is raising your tumor markers, irrelevant to any progression? Some treatments do this.
50sgirl, it seems like you have spoken my mind! I had red blood cells transfusion last week and within a day I could tell the difference in my energy level! I worked longer hours and finished so much work at home prior to the next chemo session! This week I got 2 Nupogen shots before Taxol to improve my blood count.
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Thank you.....still have anaemia but because my level had gone up a little they decided not to do a transfusion but said I could crash again tomorrow........
Thank you also for your support...... I think it's wrong that I feel scared of talking to someone who is meant to make me feel better...... But I am sure the regime is wrong for me.
S3K5 hope you are right!
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Lilly- I just got out of my MO apt and am now waiting to begin my taxol/her spring/preheat infusions. I am so sorry you are in the current situation. Always remember to advocate for yourself. We are here for you. I hope you find a path you are comfortable with and begin to feel better soon.
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SK and 50's Girl...….Saw nurse prac. today. ANd you two nailed it. She said that taxol does work on bone mets but it takes longer. She was ecstatic about my blood work, not just for today but since Jan. when I got off Ful/Ibrance. She said it's all normal that I tolerate taxol well. I had not seen her since scan of May 3 showing decreae in main tumor and lungs so, so , much better. She know that taxol is causing depression. Basically she said hang on a couple more months and see if taxol can finish off m original breast tumor and the second breast tumor which exited my breast and is now/or was skin mets. If that works, than we can talk about non IV chemo... I"m flying on cloud nine about what she said today. Or, maybe it's just the steroids!
Love and prayers to all, S
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Today I was told Onc is suspending treatment pending a CT scan. She also prescribed EPO to increase red blood cell production. I asked if we could carry on meanwhile with a reduced dose and she told me she had already reduced the dose by 20 percent due to my poor tolerance of Taxol (even though she told me she would not a month ago). So I feel relieved as today is the first day I feel almost normal.....
She said my blood results were better than last time but I wasn't given a copy.....
I asked if other treatments existed for me and she said yes but didn't give any information so I am in limbo....
I don't really know what to make of all this....
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Snooky, I am happy for your good news. It must have been such a relief to hear those words from the nurse practitioner. Woohoo!
Lily, it is odd that your onc didn’t tell you that she had reduced your taxol dose. I know you had been worried about taxol’s affect on you, and it would have been nice if you had been informed of the change. As far as the treatment suspension is concerned, perhaps your onc wants to make sure that Taxol is working before she resumes treatment. If scans show that it is effective, she can simply start you back on taxol. If scans show that taxol isn’t working, it can be a quicker transition to something else. I am glad that you are beginning to feel normal again.
Hugs and prayers from, Lynne
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Lily When you have your taxol infusion, do they hang a chart on the IV stand? The nurses come by and look at it and check things off? You know what I'm talking about?
Well, at my first infusion, I took that chart down (my right to know) and my son wrote down everything they U
You can ask for and really you can demand all test results, if you're in the US they have to give them to you.
I think of you often Lily, I am so very sorry this is so hard for you. Take care, sweet lady.
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Snooky, I am so happy that the treatment seems to be working. Steroids or no steroids, it is a good feeling to know there is light at the end of the tunnel ! Hopefully the tumor regression will continue.
Lily, so sorry to learn you are going through all this. Snooky is right - you have a right to know everything about your treatment, dosage, future plans, etc. I hope you get the answers. Please update us about your scan results and your future treatment plans. Good to know that your blood results are looking better.
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Thank you both...I am delighted about your good news Lynne...at the moment I feel relieved as I am a very strong minded person and to not be able to get out of bed worried me...... even if Taxol is working I don't want to take it again...if it's already maximum reduced and she won't allow it every two weeks then I think I need something else.....
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Snooky...great news! I'm beginning my 10th month on Taxol. Though I have liver mets only, and big lesions too, the first two scans were my best showing larger amounts of shrinkage in the size of my tumor. I've been worried this whole time how long the Taxol would continue to do it job, but every scan I've had including the last one a little over a month ago, continues to show shrinkage, which tells me that slowly but surely it's continuing to do its job, and maybe it just takes time. So I'm hoping that in time that Taxol will work on those bone mets too!
Lily...I'm so sorry that Taxol has been so rough for you. I'm so so happy to see you writing that you are feeling almost normal, that's awesome! Interesting conversation about Taxol dosage and treatment...as MO does tell me I'm getting dose dense treatment or weekly treatment, but never mentions what the actual dosages are. I actually found out by asking my infusion nurses and then started looking at my IV bags to actually see how many mg I'm getting.
PB
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S3K5 Thank you for your kind words. Means so much
pboi Thank you for for your progress report. So glad that it works that long, I didn't think it did. At my visit this past Mon. that's what my NP said, sometimes it just takes a while. Happy that your scans are so positive. Easier to keep doing this when you have Hope.
Lynne, as always, your there to say the right thing! God Bless.
HUGS to all
S
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Lily, I understand why you don’t want to resume taxol. Quality of life is so important. It will be much better for you to find a treatment plan that allows you to feel good. Please let us know about your scan results when you have them as well as what your next treatment will be. I do hope that you stay in touch with us so we know how you are doing.
Pboi, I am always encouraged by your posts. I hope that I experience good results from taxol and that I can remain on this treatment for many more months.
Four years ago today I was told that I had mbc. I was so uninformed about stage IV at that time. I was convinced that I had only months to live. I even thinned out my wardrobe to make things easier for my family. Between my MO and this web site, I learned facts based on real experiences and gained thehope that I so desperately needed. Thank you all for being part of the support I have come to depend on.
Hugs and prayers from, Lynne
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Hi Lilly I was looking for you.. and found you here...I am glad that you are feeling a bit better today.. but PLEASE you need to be more clear with your drs.. and you need to leave dr office with print out of blood tests results..unless your hospital has a patient portal where you can find the info that you need to have online.. I have been dealing with 4 different cancers not related to each other.. but I have learned only through lots of experience..that you HAVE TO ADVOCATE FOR YOURSELF.... I REFUSE TO GET HALF FAST ANSWERS FROM ANY DR..I NEED TO KNOW AS MUCH AS I CAN.. YES I CAN BE A PAIN IN THE BUTT..BUT THAT'S ME. REMEMBER KNOWLEGE IS POWER.. PLEASE KEEP ME POSTED..AND GOOD LUCK WITH YOUR TREATMENTS.. HUGS.. ~HOPE.XOX
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I had my weekly Taxol and H+P on Monday. I was feeling good possibly due to missing my treatment last week due to my low white count. Yesterday felt good as well...had lots of energy and even went to work.Today I felt like I was ran over by a truck. Fortunately my diarrhea has subsided for now but this fatigue is unbearable. I’m hoping I will feel better by the weekend. What a journey and this is just the beginning..
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