Weekly Taxol for Stage 4
Comments
-
it’sjust now being sent out even though I asked several times. He said about 3 weeks. I just feel like they never listen to me and I freaking tired of it for sure!
0 -
hugs , RT Chicago.
Being tour own advocate is not easy in the best of cases hence most people don't do ( at least here). It combined with life threatening situation breathing down your neck would require 10 times more strength.
0 -
I had my appointment with MO and Taxol treatment today. All went well. My hemoglobin is down to 7.1, so I will have a transfusion this week. I have experienced intense leg pain after my last three taxol treatments. It lasts 5 days, so ends the day before my next taxol infusion. Frustrating! I had that SE after my first weekly treatment, then nothing for 6 1/2 months then WHAM! Tylenol just doesn’t do a thing to help. I am allergic to ibuprofen and can’t take anything in that class of drugs so I now have a prescription that should help. My MO said achy legs are not uncommon at higher doses, but even at reduced doses like mine the effects do tend to be cumulative. I know I have read that here about other SEs such as fatigue.
Last night dh and I returned from 6 days in Sedona, AZ and a visit to the Grand Canyon. It is beautiful there. My sore legs and shortness of breath (from anemia) did make me feel like I was slowing us down, but my dh was very supportive, and we just went at our own pace. We had a great time. My MO and I agreed that I should take a chemo break when I go on my next trip, and he also suggested having a transfusion before I go. Right now I have a tripplanned for February . Planning ahead helps keep me feeling like things are fairly normal. Denial? Perhaps.
I returned to my urologist’s office so they could check to make sure my UTI is gone. It is not, and I am now taking a different antibiotic for the next 10 days. I have no symptoms, but, come on, I want that stupid UTI to be gone.
Here are a couple pictures from my trip. It is amazing how much beauty is out there.
This shows some of the red rock formations in Sedona.
These are of the Grand Canyon. The strength and beauty cannot be captured in photos.
Hugs and prayers from, Lynne0 -
50’s girl, I want to visit Sedona and some other places similar.
I decided last night that I need to remove myself from most threads. I am recovering from my September 9th intrathecal surgery and now need to move on. I restarted Gemcitabine last Thursday and have my second appointment this afternoon. I will miss many of you but we know who we are and I will still be around.
XXOO Maria
0 -
I believe based on today’s brain scan my medical team is going to change my treatment. I was happy for the most part with my brain scan, but I continue to grow small spots in my brain. The radiologist is pushing for me to switch to netatinib. Waiting to hear from my MO.
Liz
0 -
leftfootforward, I am sorry to hear about your one mets. I hope that whatever your new treatment plan include, it is successful and as easy as you have found taxol to be. I hope you don’t have to wait too long to find out your next steps. I will miss seeing your posts here. I will look for your posts elsewhere to see how you are doing.
Hugs and prayers from, Lynne
0 -
leftfootforward sorry to hear about the spots in your brain. Hope your new treatment plan works to get rid of this. All the best to you in your new journey.
0 -
50sgirl , how is your UTI responding to the antibiotics? When you say 'leg pain' are you talking about muscle cramps or constant pain? Too bad you cannot take Ibuprofen. Hopefully the prescription medicine is helping with the pain. Is it common for this side effect to appear after a few months? Could it be due to accumulated toxicity of Taxol? Do you know your Taxol dosage? Aren't you getting weekly treatments?
I have been getting frequent UTI too and I seem to be on antibiotics very frequently. I just completed a course of macrobid last week and 3 days later, I started to have a swollen feet and red rash on the skin. The dr said it was cellulitis and now I am on antibiotics again. After Taxol, I get severe leg cramps for a couple of days. I put bengay or icy hot cream and massage my legs. My main SE is nausea and fatigue. I haven't come across anyone on this forum complaining about nausea as one of the SE of Taxol. My MO said less than 1% of the patients have consistent nausea. Lucky me!
0 -
S3K5, Macrobid did not have an impact on my UTI, so I was given Bactim double strength and finished it last week. I have to return to urologist to repeat urinalysis later this week. Hopefully UTI is gone now. My achy legs are muscle and joint pain that is constant for several days. Unfortunately, it lasted 10 days rather than just 4 last time -right into my week off. I looked up SEs for Bactrim DS and saw that muscle aches and joint pain are sometimes experienced. I also read that Bactrim can worsen SEs of Taxol when the two medications are given together -double whammy. I had taxol infusion yesterday, so I will see how medication works this week. My current Taxol dose is 108 mg, three weeks on and one week off. My onc does think that the pain is a cumulative affect of taxol. I don’t think it is common at the dosage I am on.
Have you found anything that helps the nausea? Do you have it every day or just certain days following treatment? Nausea is difficult to deal with. It certainly impacts QOL. I find fatigue hard to take, but mine is from anemia rather than taxol. I do get some relief after transfusions, but quite frankly, I would like the anemia to go away. I don’t think it’s a good sign although I pretend that it is nothing of concern.
I know that Marianelizabeth is no longer posting here, but I heard from her recently. She is back in the hospital and has been experiencing terrible pain. Scans show a cerebral spinal leak. Her doctors should have a proposed treatment plan for hertomorrow. I know that some of you would want to know.
Hugs and prayers from, Lynne
0 -
thank you Lynne, I wondered about her...
0 -
Lynn Taxol depletes Magnesium and most people are low to begin with. Try taking high doses and see if it helps. Mag totally stopped my nightly leg cramps years ago.
0 -
Hi ladies,
I'm still here...just not visiting as often and trying to enjoy life.
Lynne...thanks for posting those pics of Sedona, beautiful! I drove through there on a trip while in college, and seeing those pictures brought back many great memories of that trip : )
Leftfoot...I'm so sorry to hear about the new spots on the brain. Hope your new treatment will be successful knocking those mets away!
S3K5...I just completed my 13th month of Taxol, and I would say at this point my main side effects are fatigue, nausea, and neuropathy. The fatigue has cumulatively gotten worse, but I try to stay active and exercise as much as I can, and that seems to be helping with the fatigue. The nausea for me, was not a consistent SE, until this summer. Really your MO said consistent nausea in only 1%, can that be? That both you and I are in the 1%?! I have no nausea, treatment day, or the day after, but by day 3 and 4 as the steriods are wearing off, the nausea begins. For me, its very mild nausea, not enough for me to take any pills, but comes and goes throughout the day. It sucks and does affect my QOL, but with my liver, I'm really trying to minimize the pills I take, so it's become something I'm just learning to live with. For the most part I did not have any issues with neuropathy until this past month. I have a few numb spots on my feet, but thankfully it hasn't affected my ability to walk/run. I'm doing my best to ice a little more, pre and post Taxol infusion. I even ice my feet at home on infusion and the day after, just in case it might help. So far the neuropathy has not gotten worse, and actually over the past week or so, I feel like it's gotten better.
Just had a PET scan yesterday. Last CT scan showed maybe possible progression in two spots, but they weren't sure. I'm so nervous what this PET will show. Praying that Taxol will work for me awhile longer.
PB
0 -
Pboi….I'm praying along with you.
0 -
Thank you Snooky! Praying for you too...think I saw somewhere on the boards today you're having an MRI tmr?
PB
0 -
I'm so relieved! Last CT in July showed possible progression in two spots, but they weren't sure so we decided to wait and see. Had a PET scan on Monday which showed everything is stable with some continued mild shrinkage. I see MO tomorrow morning, so we'll see if there will be any treatment changes.
PB
0 -
Yay Pbol
0 -
I had scans last week, and Taxol has failed me. There is significant progression in my liver. Coincidentally, I had my first hint of neuropathy. I began to experience numbness in my toes , no pain or tingling. Oddly enough, my hemoglobin “jumped” from 8.5 to 8.9 this without a transfusion.
I am glad that I was able to stay on Taxol for 9 months, but I am sad to move on. I had no major issues with Taxol. Granted, I did lose my hair, but I did not consider that to be a high price to pay. Speaking of hair, mine began to grow back a couple months ago. The surprise is that it was pure white. I now have some darker hair mixed in, but sometimes I think that I look like Mike Pence or Bernie Sanders ( depending on whether or not my hair is sticking out.) of course both men have longer, thicker hair than I have right now.I wish good responses and gentle or no SEs to everyone who is now on Taxol as well as those who read this because they begin this chemo in the future. I know that IV chemo can sound scary, but I found this to be tolerable. I hope that people keep this thread going to support each other and answer questions and concerns.
You will be in my thoughts and prayers, and I will continue to read updates that are posted here
Hugs and prayers from, Lynne
0 -
I moved on from Taxol a while back but still check in on this site to see how everyone is doing. Lynne, so sorry to hear of your progression. You're right, 9 months is a good stretch, especially if SE's are tolerable. Do you know what treatment is next for you yet? May you have a good long run with minimal SE's.
0 -
Lynne,
I’m so sorry to hear that Taxol has failed you. Do you know what treatment is next for you? Praying for you that the next treatment will knock back those liver mets.
PB
0 -
Thank you Pboi and Jaylea, My MO offered several options - anotherchemo, Afinitor/Aromasin, Piqray(if I have the required mutation which he is testing for now for future reference). He said he would prefer to go back to the hormonals now and recommended A/A. I reluctantly agreed. GASP! I do appreciate the fact that he is willing to try anti-hormonals again, but I have read many negative comments about A/A on these boards. He assured me that I will be closely monitored. I am hoping for the best.
Lynne
0 -
Hi Jaylea!
Good to see you here : ) Hope treatment has been going well for you.
PB
0 -
sorry to see you go Lynne. May the next treatment get those cancer cells.
I am back on weekly taxol after a month off as insurance denied my new treatment.
0 -
Hi Lynne,
Sorry to learn that there is significant progression in your liver. Did they say anything about the bone mets on your report?
I am on the same boat as you. After 7 months on Taxol, the PET scan showed significant progression in the liver for the existing lesions and 2 new lesions in the liver and the spine. The existing bone mets in the spine have also progressed. My MO suggested that I start on CMF since I had not taken Methotrexate and 5-FU. I am hoping this one will halt the progression. Even though I have the PIK3 mutation, the MO wants to hold off on that due to its toxicity.
I hope your next treatment works for you. All the best.
0 -
leftfootforward, glad you are back on some treatment. Why did they stop Taxol? I may have missed your previous posts about this.
0 -
S3K5 and Leftfoot, thank you.
S3K5, I am sorry that you have also experienced progression. I did not have a bone scan this time. My bone scan 3 months ago results showed “SuperScan” which is really not so super. It means that there is so much intake in the bones that there is no contrast left to show in the kidneys. Virtually all the bones in my body lit up. The CT scan showed mostly sclerotic activity that seemed to signify response to treatment. My MO felt that repeating the bone scan would not be useful. Your MO is taking an aggressive approach to try to halt progression and beat back those tumors. I like that plan, and I hope you see great results. Would your MO recommend Piqray next for P13K? I have read that the SEs are difficult in the beginning but ease up for some later on.
Leftfootforward, I am sorry for your progression, too. It must be frustrating to have your proposed treatment denied. I think that Taxol is a good choice since it worked for you earlier. What treatment did your insurance deny? It upsets me to see that insurance companies can overrule a doctor’s recommendation that has been based on experience and sound judgement. I have to admit that A/A has not yet been approved by my insurance company, but I assume it will not be a problem. Perhaps I am too naive. I hope you have a good response with Taxol again.I had seen my scan results before I met with my MO today, so I was fully aware of the progression. I shed some tears as my dh and I reviewed the report, and I thought I would show my strong side at today’s appointment. I was fine with my MO, but when I returned to the chemo room to have my port de-accessed ( I had blood tests today), the tears started falling. I was mad at myself . Why? I certainly deserved to be upset. Makes no sense to me. I have never fallen apart there before in 4 1/2 years. The nurse was wonderful, of course.. it must be a difficult job. The victories are wonderful, but watching the setbacks must be hard. Okay, that’s today’s confession.
Hugs and prayers from, Lynne0 -
the insurance denied neratinib- s drug that tosses the blood brain barrier and could possibly get rid of my brain Mets.
Taxol has my liver stable and may have slowed the progression of the brain Mets ( though it first cross the bbb). Do bs k to taxol I go.
My RO just called today and is suggesting I do another round of either gamma knife or try cyber knife for the brain Mets that showed up on my last scan. He’s doing The paperwork now.
There is an outside chance I can get I to a trial in CA fir the drug we want but I’m not holding my breath.it would be great as it would save me giving my brain more radiation.
0 -
Lynne, you have every right to be upset. I was too, when my MO told me about the test report. I had PET scan which showed the new lesions on the bones too. Your bone scan was done 3 months ago, so what tests are they doing to monitor the bone mets now? When was your CT scan done? Sorry to ask so many questions. I am just curious to know what other MO are doing for patients with similar diagnosis.
I am wondering if my MO orders too many tests. Last Monday I had a PET scan and on Thursday I had MRI of the brain and whole spine. Brain is clear but many new spots showed up on the MRI with contrast.
leftfootforward, I hope you can get into the clinical trial. But till that happens, hopefully Taxol will keep the progression at bay.
0 -
wow 50s girl , how could you be mad at yourself for crying or falling apart ?! There are not many worse places to be un , when would be one allowed to fall apart if not in our place? Hugs to you ladies and good luck with your battles.
0 -
went for treatment today. MO has ordered an iron infusion for me. That was a surprise but maybe it will help. I have been stable anemic for months now. It wasnt any worse today than it has been but I guess she had ordered it last week or thought she had.
I last had an iron infusion in March. I don’t remember feeling a lot better but it was awhile ago. Here is to hoping.
Now suffering from dec induced restless legs and probably won’t sleep well. My normal.
Take care everyon
0 -
holy flu like symptoms Batman. I guess a month off of taxol is enough for my body to be really annoyed with starting back up.
Totally not up for parenting tonight. I want to be asleep and it’s only 7:30. I milked an extra hour out but I’m done.Thanks for being my place to vent.
0
