Weekly Taxol for Stage 4
Comments
-
S3K5 , do they know what obstruction was due to ? Both you and Elizabeth- the things we have to go through , very scary , hugs.
Lynne , waiting for the other shoe to drop is scary as well ...
I still have not had port placed and have not started mine.
0 -
Anotherone, they put off doing the colonoscopy for now since I am on chemo. The GI dr doesn't think this obstruction is due to any tumor in the colon, since I had a clear PET scan last month. If my symptoms start coming back (I hope not), then they will probably schedule me for a colonoscopy. So right now, it is wait and watch.
It seems to be taking a long time to get your port placed. Do you have a scheuled date for this?
0 -
S3K5, My Hb is still low. It is 8.3 right now. I will have another transfusion if it falls below 8. I have noticed greater fatigue for a few days after Taxol. I usually spend those faults telling my dh that I can’t believe how tired I am - as if saying those words would somehow give me instant energy!
Oh, I forgot to mention that I had an appointment with my urologist this week. It was just a routine follow up for kidney surgery I had two years ago. Every time I There I get a urinalysis. Turns out I have a UTI with no symptoms. So now I am on an antibiotic. The fun just keeps coming. I did read that kidney issues can cause an increase in CA 27.29, so maybe my TM will go down after the UTI is treated
Hugs and prayers from, Lynne
0 -
No I still don't. I have the first choice for port (right internal jugular vein ) completely blocked as a complication of first port placement 12 years ago so it's a meeting with a surgeon , doppler , meeting with haematologist re anticoagulation, another meeting with surgeon . All done quite a track from home - I went for as good option as I could quickly find and it involves a few hours travel and I work a couple of days a wwwk so prefer not to miss working days. Haematologist does not have appointments for the next couple of weeks and so on. I am not hassled about it as I feel almost normal and I am doing COC protocol , diet changes , emotional sorting, complementary therapy coordination so I feel like I am doing something and I am even hopeful that on the last week PET they may notice some improvement in comparison to the first CT scan that turned my life upside down done on 26th of June.. I know it may be delusional but one can dream - it would be wonderful.. Takes time to do that comparison as the first scan was done un different hospital and getting it from there is quite a task.
0 -
Hi all...I'm here, and continuing to do very well. Its been a super busy week, getting my 3 kids back to school.
Marian...thinking of you, and hoping you are getting better pain control now.
PB
0 -
Hi Lynne,
Yes, thank you for remembering me, I have had two Gemcitabine infusions. After the first one I had a massive rash and itchiness but that stopped for the second one. I am almost scared to say it but no actual side effects and intuitively I feel this is ok for me. However 36 hours after both infusions, the first and the second one I had the most excruciating and intense relentless pain. I could not move my hand or anything and the pain was as bad as at the very beginning pre diagnosis in February. It was so bad they called the emergency ambulance out to me who gave me various other things, I could not move it was like 20 hot knives stabbing in to me. So I was in bed for 2.5 days then. This week it started again at same time and so I took much stronger rescue medication as soon as pain began........currently needing 5 additional rescue pain killers on top of the Fentanyl patches and every day pain relief. Dosage of pastches was increased last week and I was out back on corticosteriods as well. So I need to work around the pain, which also limits me as I feel too wobbly to drive or go anywhere on my own (I live on my own) when using so many Abfentiq........the pain is all around top of my back and neck and spine.
I like the fact that this is a 2 week cycle then a week off week 3 then week 4 bloods, oncologist and hopefully another infusion.
Hoping I will keep the little hair I had grown back....but so far this feels very manageable to me......fingers and toes crossed!
0 -
I see there are various references on here to ports getting blocked - do ports get blocked more easily than PICC lines?
Sorry uou are having a rough time Lynne....UTI´s can make us feel very weary.....
0 -
Lily5, I am on Gemcitabine too but have only had one infusion because my pain bought me to hospice and surgery on Monday. My team did not want me to have chemo prior to surgery or today but I will have it next week before my next surgery on Sept. 9th. Thankfully no S/E other than diarrhea. Sorry but I can't remember the cause of your pain but back in my mind I have a feeling t is something like mine. Also everyone seems to have something else with the gemcitabine. I wish you better time next chemo. Now looking at your stats I see that that you and I had/have similar stats especially the 7/14 nodes, plus dx 2012.
I have to mention that I got a pass at the last minute today (have been on bedrest except BR since Monday) for a family pizza party as all 3 kids pus 2 partners home. I got home to a party of 30+ planned a couple of months ago for a belated 70th. Who knew I would be here. People from Vancouver, Seattle and here. Amazing food and cakes. My son who graduated from nursing school in May flew in yesterday and the staff tried him for my pump plus gave him my meds to administer even an injectable. I am exhausted and back in hospice but I hope to back home for breakfast before those from out of town leave. Pretty cool eh? Also my permanent surgery is now scheduled for Sept. 9th.
XXOO Marian
0 -
Hi Marian, so glad you caught a break today.........to be honest apart from the pain, which is i n t e n s e I feel pretty ok on Gemcitabine.......is it that this chemo has a tendency to cause pain? Mine started literally 36 hours after each infusion....I am looking at it as a sign it is working.......I do hope so............what do you mean "something else with the G"?
Take care - what are hospice giving you for pain relief?
Sending you hugs xx
0 -
Lily, when I was starting on Gemcitibine, it looked like many take it with another chemo like cisplatin etc. so I wangled to see you taking same as me. My pain entirely caused by my tumour entangled with the neurovascular bundle of the brachial plexus, not chemo so I was wondering if you had pain prior to gemcitibine. I have been on Methadone for over a year with Hydromorphone for breakthrough. I also had several nerve blocks~~stellate ganglion blocks which worked for awhile. A couple of months ago the pain ramped up and by the time I came here, I was taking crazy does of everything. Monday I had a temporary trial insertion of a catheter into the intrathecal space so my meds go straight to the site rather than systemically. It has worked quite well and I did not go into withdrawal as feared. I will have another surgery Sept. 9th to insert a permanent catheter with a pump embedded in my abdomen. I hope the pain is stopped almost entirely. I am almost off hydromorphine and ketamine which was also added initially when I got here.
So Lily, what are they suggesting for you? It just not seem right that you should have this pain from chemo without something else interfering? I feel so bad for you. Where do you live?
Marian
0 -
can those if you who get a week off review your s heduke for me?
My CT from neck down is stable, ok take it. There was talk of possibly switching my treatment schedule do I get s week off to recover. My fatigue is constant and have been on weekly taxol since Oct 3018 so it’s adding up.
Also if anyone is in taxol and herceptin perjeta how does your schedule work?
Thanks in advance
0 -
Leftfoot...great news on your scans! I’m doing weekly Taxol, 3 weeks on then 1 week off.
PB
0 -
Leftfoot, I am on taxol - 2 weeks on and one week off. My scans showed reduced liver mets, bone mets are stable and my tumor markers have dropped significantly. So I guess this regimen is working for me.
I guess your MO decided your schedule based on the status of your metastatic disease , since everyone is different.
0 -
Leftfoot, I am on a schedule of 3 weeks on and 1 week off. I was switched to this schedule after my initial 8 weeks of weekly taxol. Congratulations on the stable scan results.
Hugs and prayers from, Lynne
0 -
Hello everyone!
This thread has been very quite recently. I hope it means everyone is out and about, having fun.
Leftfoot, did your chemo regimen change to give you a break? I can't imagine doing every week or every 3 weeks on with one week off. Even with 2 weeks on and one week off, I am struggling to keep my energy level up! I am ready to move on to something else, if there is an option.
marianelizabeth , how is your pain now? Hopefully you are on the right track and getting some relief.
0 -
Just jumping in to say hello to you all
0 -
I am still doing weekly taxol with no breaks. Last Ct was good so am awaiting the results of my brain NRI at the end of this month before baking a decision.
If brain is still misbehaving I thin MO wants to try to get me on another drug under compassionate use. If brain is stable then I think I will try a taxol regimen that gives me a beak. I am working now so I’d have to see how the SE were if I changed it up.
Hope everyone is well.
0 -
S3K5 tomorrow is my big day. I will have surgery #2 with an intrathecal catheter insertion with an embedded permanent pump. The one with the external pump has really helped so I am excited for the permanent one. I am also looking forward to going home as it will be 4 weeks tomorrow.
0 -
marianelizabeth, hope everything goes as planned and you get long term pain relief. Nothing to beat going home, to your own comfort place. All the best. Will be thinking of you.
0 -
best wishes Marianelizabeth
0 -
Wow there are some really tough women on here........ Taxol was sheer hell for me.....took over 8 weeks to even begin to feel ok after just 6 sessions of it (2 cycles)......have now just completed second cycle of Gemcitacabine and so far it only causes intense pain about 36 hours post infusion........BUT I asked how long a treatment cycle was and finally the Doctor said I will be on it FOREVER......chemo for 2 weeks out of every 3 until the chemo stops working or I get worse.......this is not what I figured at all.......I can feel this chemo helping me and I have a lot more flexibility in my body, I am working to keep moving and to bend up and down and generally to try and be loose and build core strength.......to be on chemo forever seems counter intuitive to me as it makes it inevitable cancer will work out how to beat it and of course doctors dont know I am adding in CBD and THC in suppository form.....
Has anyone else been told treatment FOREVER with the chemo or chemo mix you are on?
0 -
yes Lily. I will be on chemo for the rest of my life. The one time I was off, my cancer cane back with vengeance. . I have been on some sort of systemic chemo since Dec 2012.
As long as I get to see my kids grow up. I’ll take it. It’s not easy, I’m exhausted. My MO said I’ll always be fatigued. Ishe said it’s like getting old. No cure for that. My body has been treated for almost 9 straight years for cancer. It’s going to be tired. Not what I wanted to hear. Bit again. I’ll take it. I’ve gotten 9?years to see my kids grow. Hoping to see my littlest graduate from HS.
Not idea but I’m still her
0 -
Wow that's incredible and scary too that it came back so fast.....what was your original cancer,? Ductal or lobular?
I admire your bravery and hope you can find things that help with side effects......I am hoping the oil helps eliminate tumour stem cells....I saw that happen on scans with my husband but sadly the cancer had already spread.....one year tomorrow since he collapsed in my arms dying....
0 -
Hi all...I'm here. Thankful to be feeling good these days, and trying my best to enjoy each day!
Marian...thinking of you and praying for you. Hope the surgery was a success, that you're recovering now and in less pain, and that you'll be on your way home soon. Please come back and give us an update when you're feeling up to it.
Lily...I too will likely be on chemo for the rest of my life. I was diagnosed with extensive liver mets one year ago, and started on chemo as my first line treatment. If/when my liver mets are in better control, I may try hormonals at some point, but I have the FGFR1 mutation, which might make hormonals less likely to be effective for me. As of this month, I have been on Taxol for one year, and I am praying that it will continue to work for me as long as possible. I have 3 kids, my youngest is 11. I'm trying to do whatever it takes, to watch them grow up, for as long as I can. I am thankful, for the most part Taxol has been kind to me, but I have days where I'm exhausted/fatigued, nauseated, and I do get hit with steroid sleeplessness and of course let's not forget about the steroid crash. But, overall I'm doing well and so very thankful for this year of memories I've had with my kids and family. I think it sounds like a good sign that you feel that the Gemzar is helping you. I was on Gemzar for about 8 months in combo with Taxol, and it took a little while for me to figure out how to manage my side effects, and once I did I started to feel much better. I'm so very sorry to hear about your husband.
Hope everyone else is doing well.
PB
0 -
I'm living a nightmare! I went for my scans yesterday. I met with my oncologist for results. He had not received the written report from the radiologist but looked at the scans himself. He told me I was stablewith possible reduction in the liver mets.
I had my taxol treatment then went home thankful. BUT HERE COMES THE NIGHTMARE! He emailed me later in the evening saying the report actually shows progression again in lymph nodes in my stomach and chest. As well as progression in the liver.
I have not had a new biopsy since last July prior to all of the following treatment. Last one was ER + her2 negative
I've had 23 rounds of weekly Taxol
With only two weeks off for a trip in June.
Before this is was on Xeloda for 4 months
Before Xeloda I was on Ibrance and letrozole
I'm going to contact mayo to find out about biopsy and trials I guess. I know I can't start another chemo or I won't qualify. How long does it take to find out etc..
Has anyone taken Alpelisib/piqray with fulvestrant?
There is a part of me that just wants to stop all treatment and just wait until I need hospice to end this nightmare. I don't know what to do next...
0 -
Rt Chicago...I'm so sorry to hear of your progression. It's something that is weighing heavy on my mind too. My last scan showed possible progression, but we decided to watch and wait. My PET scan is coming up at the end of this month. I know that you're feeling like you're living a nightmare now, but my hope is that once you get a new treatment plan in place, its going to knock those mets away! Not sure if this is helpful to you or not, but if I do have progression at next scan I believe I'll be moving on to Doxil.
Did you have genetic testing with your biopsy last time? I did it with my biopsy last year, and I think it took almost a month to get those results back.
PB
0 -
Rt Chicago, what a crappy thing to happen. I believe there is a thread for Alpelisib and Fulvestrant. I commend you for being on Taxol for so long. I was on a short course of dose-dense taxol and was miserable. It did knock back my lung, esophageal, and liver mets but bone mets continued, so I moved to Halaven. Like pboi, one of my options is Doxil. But only a couple of doses because I'm close to my lifetime limit of cardiotoxic treatments.
You've got a lot on your plate and I hope you have a trusted MO in your corner that can help you navigate through your decision-making. if you're especially anxious, you might want to think about an anti-anxiety med like Xanax or Ativan. They're pretty mild and help calm the monkey-brain.
0 -
Thanks Jaylea! What a crazy roller coaster it has been. They are still disagreeing over the images but I’m in agreement with my MO. Taxol did it’s job and got my liver to stable and I still believe the y90 helped. All that to say I’m starting faslodex Thursday. My tissue has been sent to foundations1. If I have the mutation they will add in Alpelisib. If not will start a trial that includes faslodex if I’m understanding everything correctly. Taxol was such an easy treatment for me. I know that’s not true for everyone. I’m thankful.
0 -
Rt_Chicago, I am sorry for taking so long to respond to your post. I have been away for the past several days and have fallen behind on these boards. I know how it feels to be told about progression, but to hear that news after being told that things were stable with possible reduction.....I can only imagine the letdown, disappointment, and shock you must have experienced. I can understand how your first reaction would be to just throw up your arms and give up. It sounds like you have gone past that now. I do hope so since there are still options out there. I am also aware that most clinical trials will not accept me if I have another chemo after taxol. I am sure the researchers have their reasons, but it really does limit us as patients. I hope you will feel better about things once you are settled into your new treatment plan and can see a clear path ahead of you. Please let us know how you are doing and whether or not you qualify for Alpelisib or a clinical trial. You are in my thoughts.
Hugs and prayers from, Lynne
0 -
Thanks Lynne, I'm still a little emotional and trying to soak it all in. I'm praying I have the mutation but thankful they seem to be on top of the trail situation if not. I'm just trying to steady my heart. I'm not ready to lose this battle not do I want my quality of life completely destroyed. 😞
0
