Weekly Taxol for Stage 4
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I find I feel the worst 2-3 days after my infusions. Hope you feel better soo
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Thank you everyone for your invaluable support..i will definitely carry on hanging out here.....it's 17 days since my last Taxol, which was only number 6.... Yet I still have a very sore stomach, still struggle to eat anything close to a normal meal and I find going to the toilet almost impossible.....I take esemeprazole for my stomach but it seems to not help much.....
I also still have horrible taste when eating, drinking or even cleaning my teeth....
I do advocate for myself a lot but the oncologist makes it plain she doesn't believe me....I wish I was less sensitive to drugs etc as it makes everything much harder.... and I am fed up with having to prove them again and again.....
My toes and fingers and the side of me feet and hands leading to them still go fuzzy and lose sensation intermittently......
If you are new please don't worry.....I have numerous allergies and intolerances to drugs..... xx
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We believe you Lily and I really hope that your MO also believes you the next time you see her. It sounds as though neuropathy is rearing its nasty head with what you say about the fuzzy bits and loss of sensation intermittently~~I wonder if it will be less often day by day without Taxol.
This is my week off Taxol and this past week has been so action packed, it seems like 2 weeks. Taxol was last Thursday and the next day I flew to Terrace, BC which is northwest BC. My youngest son graduated with a BSc in Nursing and besides the convocation there was a lovely evening with just the nursing grads and their family and friends. There were other events and I enjoyed it all with much pride.
I got home yesterday and had a full on CT with contrast today~~chest, abdomen, head and legs including knees, legs and feet. I am not too worried but will be glad to get the report.
Leftfoot, what happens in those 2-3 days? I usually crash the second or even 3rd day. I feel very tired today.
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Glad you had a Happy time at your Son's graduation. Know you were PROUD!!! Have ? Did you have a PET CT scan. My cancer is stage 1 grade 2 invasive mammary. I had double mx in April and this week had PET/CT and it lit Up. Thorax with 4.4 SUV there sending back to breast surgeon. my first dx was IDC in left.
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Lily, I can totally understand what you are going through. You don't have to prove to anyone that you are going through these awful side effects - they have to listen to you and make you comfortable. It is all about the quality of life!
I have been seeing a GI specialist for my stomach issues. With Taxol and some of my pain medicines, I had a lot of burning, discomfort in my stomach (got worse if I ate something). He has put me on a strong PPI called Dexilant which has definitely helped. In addition to the IV Pepcid, I take Zantac along with my pain meds. I hope you can find something that helps with your stomach issues. Last week I had met with a wonderful NP and she told me that neuropathy is something that they closely watch for and if it seems to be getting worse, then they stop Taxol right away. Even though this is reversible, it takes a long time (not to mention the discomfort) before it goes away. I have been using ice packs on my feet and hands, so neuropathy has not been an issue so far .Do take care of yourself and keep us updated - hope you feel better soon.
Marianelizabeth, I am amazed by people like you who can do so much soon after their treatment! My tiredness starts on Day-1. Days 2-3 are the worst for me (I literally have no energy). Hope your CT scans are clear. How often do you get the scans? Why did your MO order CT of legs and feet? Just curious.
I started Taxol in 1st week of April, so I guess my MO will probably wait till the end of this month for a scan.
Take care ladies - weekend is almost here!
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Does this group include those on Abraxane? (Protein bound form of Paclitaxel
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Stilts, I am not on on Abraxane and will lea e it to others to weigh in. Looks like you have been Stage IV with bone mets for just over 5 years? How long on Abraxane?
beep7bop, not sure what PET/CT is? I have only had one PET and that was a baseline back in 2012 pre first chemo and BC. I now have CT's and MRI's approx. every 3 months. MRI scheduled for June 22 and am waiting for results from last week CT. We had a big fundraiser for a PET machine in Victoria and it issuing installed as we speak.
S3K5, the CT of leg with knee and ankle is because recent bone scan showed a little more light up than usual in a very old injury site. Just making sure though highly unlikely anything untoward. I agree that neuropathy is the main thing they/we watch for. Do you know your dosage? I have never used ice and the pain I have on right hand/arm are already so bad that ice would make it unbearable.
I am watching on TV World Cup Women's' Soccer Canada/Cameroons taking place in France. One of my best friend's daughter is on the team though not a starter. Saw my friend in opening seconds in the stands! KEEPING ME OUT OF TROUBLE HAHA.
Marian
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Stilts, I don't think there is a separate discussion for Abraxane for Stage IV. Majority of us are on Taxol. But since the active ingredient of Abraxane and Taxol are same, you are welcome to join in and let us know how you are doing on Abraxane.
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S3K5.....Do you know if all chemo's cause neuropathy? I've have 12 taxol infusions over last 4 mos. After my first one my left foot started with the pins and needles. Once said to take B12 500-1000mg daily. That seemed to keep it from advancing.
Last night was so bad that I couldn't sleep. My foot was tingling burning more than normal. My leg had shooting pains and tingling all the way to my thigh. The muscles in my thigh are aching.
This came on out of the blue. ( my whole leg involved) Does this sound like neuropathy?
Thanks so much, Snooky
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I would check with my doctor. When was your last Taxol and when is the next. No not all chemos cause neuropathy but Taxol certainly can. Maybe because I am on low dose It had no happened so far
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Anyone who is concerned about developing neuropathy - have you heard about using the frozen slippers for hands and feet? I did it for my six months of Taxol and do not have any neuropathy. For my hands I just used cups of ice but there are also mitts with the frozen inserts
Search for Natracure slippers on Amazon or EBay — the company themselves sells on EBay and has the best price, usually
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Snooky, I just saw your post. From my experience, neuropathy symptoms comes gradually. What you are experiencing definitely needs to be checked out by your doctor. !0 years ago, I did have neuropathy with Taxol, but the symptoms of burning and tingling was gradually increasing every week. I did not have shooting nerve pain. But your symptoms are different than what I had, which may or may not be neuropathy. Your doctor can prescribe you something for pain relief. Neuropathy caused by Taxol is reversible but it takes a long time. Please keep us updated.
Olma61, since I had neuropathy with Taxol 10 yrs ago, this time I started using ice packs for hands and feet. I have finished 6 chemo treatments and so far no symptoms of neuropathy. I use Paxman scalp cooling and my hair has thinned but not bald. I'll have to wait ad see if this really works in preventing complete hair loss.
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Thank You S3K.. Will definitely bring it up at my next apt. The sad thing Is, I can't do the icing like the rest of you find works so well. I have Raynaud's phenomenon . Which is poor circulation to feet and hands. The cold when going outside in winter is so painful. My feet and fingers turn blue and then when they warm up the tingling and burning is totally unbearable. I guess that is what frostbite must feel like.. I've had it for years. So to ice my feet and hands would send me into spasms of pain. Sigh.
S3K.....The way you describe the systoms as coming on gradually is exactly what I was going thru. Then just that one night it was totally different. ( That was Wed. ) Then last night, Thurs. it didn't happen! Just normal tingling which is more of a nuisance.
Another odd thing about my Taxol treatment, I've done 12 infusions, around 8, 9, 10 I feel into a terrible depression. Didn't eat, couldn't sleep. It was bad and deep. The doc prescribed low dose Trazodone before bedtime for sleeping. It worked like magic. Plus my emotions started to just soar and I feel fine on Taxol. He also lowered the steroid dose and changed infusions to every other week. I mostly feel as if I don't have cancer.
And, Praise God, it's working. On all areas except my spine. So, I have no complaints. I feel blessed to be on the drug. And believe me, it took a long time for me to feel that way.
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I asked about two weekly infusions and guess what? Onc said no it would not work.....
I went to see a different oncologist today for a second opinion and he told me there are many other options for me not necessarily Taxol. I learned more in my appointment with him than at any with ',my," onc.......
I am feeling more human every day but still v tired and find my memory is erratic,!!
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Yay, Lily! I am so happy that you sought a second opinion and found an oncologist who is willing to listen to you! My best to you!
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Thank you.... sadly I can't have him as my Oncologist but I feel much better informed now and have the names of the most common alternative treatments.....am also enjoying my break from chemo and weekly ambulance trips
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Feeling so low ladies:(
My mom's lfts liver report is not satisfying...high
Bilibirin...so chemo is being halted...tried every chemo but it's progressing:(... Esp liver n bone mets ...plz help onc has last option is faslodex...
Do lfts normalize on Thier own any natural ways?
Or any other info plz let me know
Anxious daughter:(
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Hi SanJF,
I am sorry I couldn't follow your message - are you asking about liver enzymes? If she had Ibrance earlier, she probably had Faslodex or Letrozole with it. Sorry to know your mom's cancer is progressing.
Have you requested for a genetic analysis to check for mutations? Maybe she would qualify for target therapy? I just got one done at MSKCC - this is good information to have, in case other treatments fail.
Since each one is different, we don't really know what works for us. How long has she been on Taxol? Hope her MO finds something effective to stabilize your mom's mets. Where does she get her treatments? Can you get a second opinion?
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Yess talking about liver enzymes. ...
What are tests for genetics analysis?
Taxol for 4 months. .not tolerable....then navelbine.. .with lots of SEs...
Now options are only faslodex hope n pray may it me effective and tolerable...
Thanks for quick response ...lots of hugs n kisses with prayer s for u!
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SanJF, the genetic tests are done on the biopsied tumor specimen for mutations of the cancer cells. The insurance covers for the test, as long as the MO writes a letter of medical necessity authorizing the test. Where are you located? Are you in US? Many hospitals have connections to genetic testing companies. Has your mom's oncologist suggested Faslodex as a single therapy? I got faslodex as a combo with Ibrance and Kisqali. Did your mom ever get Faslodex?
There is another new medication called PIQRAY, just approved for people with PIK3CA mutation - but to get this, genetic testing of the tumor is necessary. Here is the link to his new drug: Don't know if you have access to this medication, depending where you are located (USA or out of USA)
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Snooky, glad you are feeling better with this new medicine (Trazodone). I do feel depressed but not enough to seek medicine for it yet - may be later! Depression is a horrible thing. How is your neuropathy? Is the pain under control? How does your MO monitor your bone mets? You are right about Taxol not working so great on the spine mets - my pain has not reduced at all. But my tumor markers are reducing (indicative of reduction in liver mets, I hope). I am scheduled for PET scan in 1st week of July - hoping for good scan results!
Lily, glad you are feeling better and sought a second opinion. If you cannot have this new doctor as your regular oncologist, then do you have to go back to your previous onco? Or will you be looking for a different one? Good luck with the treatments. Hope these work for you.
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Thanks for the information...
Have u tried Piqray?
No not at all....she had not used faslodex before...it's being used as a monotherapy now...
Hope n pray it works:(...
Not in a condition for more biopsies...
What chemo are u on these days...?...on faslodex these days? Or TM are decreasing on what chemo esp for liver mets ....too stubborn to go man!
...wish u a healthy speedy recovery ....
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Outside of US...
No such facilities or insurances are supported here...
Even recent discoveries and meds are not easily available here...too costly treatment as you are on Ur own ....
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SanJF, outside USA, the newest medications are not readily available. I am on Taxol for liver mets and my tumor markers are going down. Due for a scan next week.
Hope faslodex works for your mom. This is very tolerable since it is a hormonal treatment and not a chemo. Please keep us posted.
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Love u for that ie quick response and prayer...
Faith in God ....when earthly things don't cooperate that's where Almighty do wonders!
Wish the same for you!
Yeah this is the case newly researchs are not being practiced outside US and the people s hands are tied in a sense:(
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Has anyone heard of using lactoferrin to help against the metallic taste?
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Lily, all I know is that it lactoferrin is a protein found in milk. But I have not seen any supplements with this name. It will be great if someone knows how to resolve the taste issue with Taxol. My taste buds are completely shot by Day-2. I cannot taste anything (not even my coffee!)
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I found them on Amazon and read a study about it, will try and post it here...I can't even drink water on it and six weeks after last dose, I can now taste most drinks....not as well as before but better....
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Scan update after 11 weekly rounds of taxol my scans show almost 50% reduction in liver mets as well as the lymph nodes involved in the party.
I'm thankful and feel really good on this treatment. I hope this encourages someone just beginning this journey with taxol and liver mets.
I am currently being treated at the University of Chicago and I believe I'm receiving excellent care. However, I have an opportunity to be seen at Mayo Clinic later this month. I didn't think they would actually see me since current treatment is working. I don't want my current oncologist to think I'm questioning his care. I'm quite fond of him and don't want to step on his toes. Mayo says he won't know but I know there is that "eagle eye view" all docs have access to right?
Taxol is working. Am I just adding stress by going to Mayo? Your advice means so much to me so thank you!
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Rt_Chicago,
First of all, WOOHOO for that 50% reduction in liver mets and lymph nodes. What great news in just 11 weeks. I am doing the happy dance for you.
As far as the second opinion is concerned, if your main concern is your current onc’s feelings, I think you should take advantage of the opportunity to hear what Mayo has to say. I would be surprised if they recommended that you stop a treatment that is working so well, but they might give an opinion about tests or about future treatments, etc. Most oncologists are not offended when their patients go for second opinions. In fact my onc is open to them. Your onc will want what is best for you, regardless of whether that includes him or another onc. Often times, when a patient goes to a doctor for a second opinion, the patient brings those opinions/recommendations back to the current doctor to discuss them. They often stay with their original doctor even if they change treatment based on second opinion. Now, if you don’t want to get a second opinion because it will add stress to your life, you shouldn’t do it right now. You don’t need any additional stress. Things are going well, and you can stick with what you have. You can always go for a second opinion later. That possibility will always be there.
There is no wrong choice for you right now. Whatever you choose will work out. Let us know what you decide to do.
I am still doing the happy dance for you. WOOHOO!
Hugs and prayers from, Lynne
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