Weekly Taxol for Stage 4
Comments
-
Oh Lynne praise the Lord! I have tears of joy for you! I’m going to do a happy dance just for you! I just got back from Mayo and the oncologist told me she has a couple of patients that are also getting years out of taxol! May that be the case for us too! I’ll post about that amazing visit soon. But right now I’m celebrating you and your awesome scans! Thanks for the details! I’m so encouraged! 🤗
Michelle
0 -
First comment Lynne is GO! They have asked you to go and it IS your break and to spend time with your grandchildren sounds like a gift from god. Then U want to say how happy I too am for your results. It will be a good time to go for sure.
PB, last week I read a lot of threads including the Taxol ones and another thread that is rather like this, where there are not so many that it feels like we can keep up with our friends. My memory sucks but it is something like “is that shadow a recurrence?” Anyway, it was nice to hear from people and feel that there is good news sometimes.
Leftfoot I have been in the low dose 3 weeks and a week off since the start of December and hope I can stay on it too. Though this is not my break week we have been out in our catamaran since Friday and two of our best friends were with us until yesterday. They did all the 3 dinners they were here for and the shopping along with my husband before we departed. I got to sit on the boat and relax. The three of them did everything and now my husband is doing the same. We go home tomorrow for labs and chemo Thursday. The bad part is the non stop pain that has been difficult to get and stay on top of despite the increase of Metadol. I called the nurse line today and got a call back. I just wanted it to be known and a nurse will check in tomorrow too. It seems hard to believe there is no progression or something else. Our cancer agency just got our own PET/CT machine going~~we donated $500 which was matched during the campaign. Anyway I will be asking when I see my MO on the 30th for an ASAP scan and I will be surprised if it is denied. I will ask to get one done in Vancouver if any problem in Victoria.
Back to our holiday~~we have seen many bald eagles including 2 yesterday that we’re trying to drown a great blue heron. Today we watched an otter fishing successfully all around us at our anchorage. Lots more and it has helped distract and I am grateful for that.
Marian
PS I am using my phone so excuse mistakes
0 -
Lynne, I couldn't be happier for you! I thank God for your good results! I too hope that Taxol works well for you for a long, long time!
Pboi…. I'll be thinking of you and praying for good scan results. Eleven months wow. That is great.
I'm a bit anxious also, I'll be having scans the first week of Aug. but I don't know the date as yet.
HUGS
0 -
I feel like a vampire. Just had my treatment and now have to go to watch my kids play soccer at s tournament. Bringing umbrellas as thee is no shade at this park. Tired, slightly nauseous,and sore. But I’m not letting cancer make me miss this for anything.
Thinking of you all
0 -
Leftfoot, That hot, bright sun on top of treatment can be hard to take. Drink lots of water. It is too easy to become dehydrated. I admire you for living your life and watching the soccer tournament. I don’t know where we find the strength sometimes. Your kids are probably very happy to have you there.
Marian, Your vacation sounds like it was very special and relaxing. How are you feeling after yesterday’s chemo. I hope the scans are approved quickly so you can get more insight into the source of that pain.
Michelle, I hope you tell us all about your visit to Mayo soon.
Snooky, Pboi, and Marian, I hope your scan results are good. I am pulling for you.
Thank you all for celebrating my scan news with me. I can now admit that I was more nervous this time than I was with previous scans. I know that my treatment choices narrow every time one fails. Oh well, enough Debbie Downer talk. I am still here - laughing, talking, and having fun, and I am not losing sight of that. I feel blessed.
My dh and I have decided to join our 2 sons and their families at Martha’s Vineyard. Everyone seems excited to know we will be there for a few days. I can’t wait. We head down there on Monday. I am glad that it is my break week.
Happy Friday.
Hugs and prayers from, Lynne
0 -
So glad you made the best choice Lynne!
0 -
Lynne I hope you have a wonderful trip! I’ll post my awesome Mayo visit details this week after I meet with my main oncologist. For now the plan is to ride the taxol train as long as possible. But I’m very hopeful about future options, recently approved drugs, and trials offered.
God bless you,
Michelle
0 -
Hi everyone...
CT scan results are in, and mostly good news. After 11 months of Taxol, continued stability in my main lesion but maybe a tiny 3mm increase in two existing 1cm lesions. Due to the small increase in size they are not sure if it was a true progression or machine/human discrepancies. So I'm going to continue the weekly Taxol for another 2-3 months and have a PET scan instead of a CT next time.
Unsure how I'm feeling about this, ugh! Trying to be thankful and happy that it looks mostly stable but then worried that Taxol is starting to fail me.
How's everyone else doing?
PB
0 -
pboi, WOOHOO for good results. Those minuscule increases are probably not of any significance, but I do understand why you would worry. I always say that "stable" result is my goal, but let's face it, I really want to hear "No evidence of active disease". Try to relax until your next scan. If there are changes going on, they are occurring very slowly. I vote for the thankful and happy route. Celebrate....WOOHOO! I am doing the happy dance for you.
I had an infusion this morning. My hemoglobin only dropped to 8.8, so no transfusion was needed. My white counts didn't rebound as much as usually during my week off, but I squeaked by. That's good enough for me.
My dh and I had a fantastic time in Martha's Vineyard. We spent lots of quality time with our sons and grandchildren - so many wonderful hugs, laughs, talking, and just plain old fun. We were on South Beach when a shark was spotted offshore, so everyone had to get out of the water for several hours. We had already spent several hours at the beach and a lot of time riding the waves, so we left. My two granddaughters jumped off Jaws Bridge (featured in movie Jaws). Their brothers, who are older did not try it. Girls rule! I did lots of walking, and it felt good. I think my body produced extra adrenaline for the week. I never thought of cancer, and I felt energized. My sons leaned towards that overprotective mode, and I pulled out my mother attitude and let them know in no uncertain terms that, yes indeed, I could walk that 1:2 mile from our hotel to their rental house. They wanted to pick us up in the car.
Marion, I think I read that you are moving on from Taxol. If you see this, let us know what your next treatment will be. If you already told us, chalk the question up to chemo brain.
Snooky, Do you know what treatment you will be moving to and when?
Has anyone heard from Lily since she came off Taxol?
Have a good day, everyone. I hope to hear how you are doing.
Hugs and prayers from, lynne
0 -
hi ladies. I am going to be joining you - well , at least for a few months as later I am supposed to continue to H&P only. I shall look through the whole 70 odd pages of discussion. I have already have read through the whole of fenbendazole thread and the whole H&P one, this one is the next.
My best wishes to you all.
0 -
Lynne, I too have been thinking about Lilly. Well, there's seem to have been some disruption at my ONC's office. I've written three letters and left two phone calls which the Nurse never returned. This is most unusual. The way I was describing the neuropathy in my leg made my ONC anxious about DVT (blood clots) so last week I went in for a Doppler sonogram. Thank God the result was negative.
Last week the Nurse scheduled me for a Nuc.Bone scan plus CT scan and followed by an hour long MRI. All week I have been trying to get this changed. I cannot do all of that in one day.
But once all my scans are in I should be starting Zeloda, unless the scan results give them a reason to change it. They are already talking about 3000mg per day 14/7 schedule. I just need to get thru these scans. The first two are this week on the 8th.
Wish me luck
Snooky
0 -
Another one, Welcome to our little group. It sounds like you have a good plan in place. I have been on Taxol for 6 months. I was on a weekly schedule for 8 weeks, then I switched to a reduced dose and a schedule of 3 weeks on and 1 week off. I will be on Taxol as long as it continues to works. I have found it to be an easy treatment for me. I did lose my hair, but it has already started growing back, but it is still thin and very short. I have been battling anemia and have had several infusions. I cannot blame it on Taxol because it started before I switched to this treatment. I have seen a slight improvement, and I credit taxol for that. Neuropathy is the SE I worry about the most but so far I have not experienced it. Some of us ice our hands and feet during the infusions because it is suppposed to prevent or delay neuropathy.
Let us know if you have any questions. Share you experiences. It will help others.
Hugs and prayers from, Lynne
0 -
Wow Snooky, I wouldn’t do all three scans in one day either. I find MRIs exhausting because I feel like I have to concentrate on being still the entire time. I know that sounds crazy, and I laugh at myself as I type that. I do have the nuclear bone scan and CT scan on the same day. The center coordinates them well so that I have the bone scan tracer injected before the CT scan, then the bone scan about an hour to and hour and half after ct scan. I eat breakfast between scans. I wonder what is going on at your onc’s office. Maybe people are on vacation, but that is no reason to leave you hanging. I hope you get it straightened out soon. That dose and frequency of xeloda seems very aggressive to me. Do you think your MO would consider 7 days on/7 days off. Studies have shown that it is more effective with fewer SEs. Make sure you generously put on a good skin cream. I used Udderly Smooth.
Hugs and prayers from, Lynne
0 -
yes I definitely will organise icing by whatever means (not sure how yet - the centre had caps but unsure re gloves/socks as my hands are my working instrument so I will be professionally written off if sensory feedback diminishes.
I remember taxotere was easy ( well , eyelashes never came back the same and tiny area on one of my toes left numb but dies not affect me)- surprising how I did not fuss about my hands 13 years ago - I guess carefree youth was the reason. Anybody knows about glutamine - on one hand it is supposed to prevent neuropathy but on another it is metabolized into food for cancer- or I am mixing something up ?
0 -
HI Anotherone, welcome to the group. I am use cooling scalp device along with cooling socks and gloves. The center where I get the treatment provides the cooling device but I had to order my own cap from PAXMAN. If your center provides this, then they will instruct you about how to get it.
I bought cooling socks from Amazon called "NatraCure Cold Therapy Socks" - these work great! For hands, I use gel ice packs which I purchased from Walmart . These are available in any store (Target, CVS, Walgreens). I also purchased 'spa gloves' which are thin cotton gloves to wear when I am icing my hands since my hands started getting more sensitive to cold temperature.
The nurses are very helpful and they will probably help you with the cooling. I have been on Taxol for a little more than 4 months and my hair has thinned but not bald. So far, I have a little neuropathy in my toes but nothing major. So I guess, in my case, I feel cooling has helped me a lot.
Good luck with your treatments. Do you know what kind of schedule you will be on? I am on 'two weeks on/one week off' schedule.
0 -
Lynne, I too have anemia and my MO is closely watching my Hb levels. I take Nupogen shots every week since my WBC drops. Do you need to take any growth factors? Do you have any fatigue? I have been on Taxol for 4 full months and my fatigue is getting worse.
0 -
thank you for your responses , ladies.
Do not know yet about schedule. I still have a bit of hope that my scans that I should be doing next week will show improvement or at least no progression from the original diagnosis 27/06 scans with all the complementary therapies and diet change so I will talk to the doctor again about starting with just H&P and seeing how it goes. My fingers get numb easily with a slightest bit of cold or in the wrong position so icing not going to be fun but needs must. How do you keep ice packs attached to your hands?
0 -
Anotherone, there are icing gloves available on Amazon but I don't have experience with them. I wrap my hands with cold gel packs and the nurse puts a disposable glove on it to keep it in place. Off late, my hands are becoming too sensitive to cold packs so I skip the extra glove - I just wrap the ice pack till I can tolerate it, then take a few minutes break and redo the wrapping. I figured this is better than not icing at all!
Anyone else have a better idea of cooling your hands during Taxol infusion?
0 -
Welcome to the group, Anotherone. At my infusion center, there are several of us that use frozen water bottles to ice our hands. I wrap the bottle in a pillowcase and hold the bottle with both hands. For me, after about 8 months or so I started to get tingling in my thumbs, so I ditched the pillowcase and just hold the frozen water bottle. I gotta say I think it's worked, the tingling in my thumbs has mostly gone away, so I really believe that the icing is working.
PB
0 -
Wow you are all much tougher than me if you have been on Taxol continuously for months.....
I have thought about you all but just could not get on to message as I wanted to be as far away from cancer as possible and think about my husband for a while as I was diagnosed only 4 months after he died and it took over from the grieving process.
Hi everyone, I am back! Sorry to be so silent but have kept off computers, facebook and anything potentially depressing for last few weeks...... Slept for many hours during the day initially but in last month have been able to do a lot more normal life things and so I just went in to denial. I had hope and thought of plans for the future and focused on day to day.........then I saw oncologist who tells me that its a problem as "I don´t tolerate chemo" and asked me what we should do. She said Taxol clearly did not suit me but that I had not had much treatment and am clearly more mobile than I was (true, I have even been driving....oh the freedom) ...... Surgeon told me I can go without the harness now BUT when I do my ribs become too painful almost to breathe on one side....but what joy to go shopping for clothes and just my walker and feel normal.
Anyway Oncologist gives impressions I will always need chemo and gave me choice of Gemcitabine or cabecitacabine....... she said both would work as well but indicated i would probably not remember to stick to a rigid 12 hour schedule to take 4 pills and that was important so therefore the IV chemo was probably better. The only thing she did to indicate she understands me a little was to ask me if I wanted a week to think about it, which I had already decided I would say anyway....and I am in that week........ a "life" of needing chemo every few months if not continuous does not feel like life to me so I am seriously considering refusing chemo and doing the 1 gram of cannabis every day for 6 months instead. The evidence is that chemo does not kill cancer stem cells, and it is these that cause spread, but it does kill normal neoplastic cells......a fellow patient is about to start her fourth bout of chemo in the two years since she was diagnosed......and even while on chemo her mets have spread....
Does anyone have any experience of Gemcitabine? Is it easier than Taxol? I have to say I am feeling really down now as feel like my life is very close to the end......I have been trying to build in things to look forward to.......
0 -
Hi Lily, so sorry that you are going through such a tough time. I totally understand if you want to be left alone but I am glad you came back and posted on this forum.
I was on Gemzar for 4 months and it wasn't as bad as Taxol for me. There was no hair loss. Fatigue was minimal. The only SE I had was low blood counts, for which I got blood transfusion or Nupogen. MO switched me to Taxol since the scan showed that my liver mets were progressing on Gemzar.
I would like to read up more about your sentence; "The evidence is that chemo does not kill cancer stem cells, and it is these that cause spread, but it does kill normal neoplastic cells". Do you have any literature that gives some more insight on this? I have been under the impression that progression was due to resistance of the cancer cells to the drug and/or mutation of the cancer cells. It is true that we have to be on one treatment or another for the rest of our lives, but some women on this forum have achieved 'NED' (No evidence of disease') or remained progression free for long periods of time. It is these type of stories that keep me going.
What is cannabis used for? Is it for controlling the pain? Just curious.
We are here to support you, but only virtually. Hope you have family and friends close by to support you during this difficult time.
0 -
lily55- I offer my experience for you to think about. Everyone's Journey is different. I have been on systemic chemotherapy for 7 years no breaks. It sucks anc I am very tired of it. I wouldn’t trade it however for anything as i have seen my kids get 7?years older. I have traveled the world ( Australia, Ireland, equador, Mexico) with my family. my body is tired and I hate that this is my life. But chemo therapy has given me 7 more years with my kiddos ( now 17,14, 11, snd 9). I still have s pretty good quality of life.
I wish you well and hope you are able to find a plan that makes you happy. You are the driver of this boat and only you can decide what is best for you.
0 -
S3K5 here is one link but there is a lot of reliable information on the internet from reputable places but will try and post a few more links although i am not good at this....
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6321478/
0 -
Thank you for sharing your experience of Gemzar......although it seems so minor in comparison losing my hair has really affected me yet logically it should not.....
0 -
pboi and s3k5 , thank you for tips.
What a sh..ty lot we have - facing chemo to the end of our lives.
Better than our children having to face that and us witness it so could be worse I guess.
Here is about cbd
0 -
Lily and Anotherone, thank you for the links. Very informative.
0 -
Lily55, I started to write earlier in the day but we have friends visiting and it got away from me. They are making dinner so no complaints! I see that there have been many posts but I won't have a chance until later to read up. I plan to stay on this thread for awhile as it is so friendly and interesting.
I start Gemcitabine tomorrow so hope t be able to give you first hand knowledge. Lynne, you were right, Paclitaxel is over and just in time as neuropathy in my toes and tinnitus in my right ear~~the pulsate kind. I hope both disappear. Does anyone know how long it could take for those S/E to disappear? I had neuropathy in the first Taxol go years ago.
My pain continues to ramp up and besides the chemo change there may well be a surgical option since my stallion ganglate nerve blocks have stopped working. This may well be invasive and I could lose the use of my arm but can no longer live with neuropathic pain. I am taking (as prescribed by my pain team) loads of hydromorphone that gets higher by the day along with an increased dosage of Metaladol. I heard via one of the nurses in the pain clinic today that my case was to discussed at a team meeting in the hospice where I might be admitted to for pain management. I will keep you posted on the chemo and pain.
0 -
Where is everyone? I hope you are all busy living life and have had no time to post.
Today was infusion day for me. It went smoothly. My hemoglobin was 8.3, so no transfusion needed. Yay! My TMs have been climbing for the past few months, but they are still 1300 lower than they were went I started taxol. My scabs were good last month.in the past, my TMs climbed for 6-8 months before progression was seen. Since the scans were good and I am feeling great, As my mo said, Taxol will eventually fail, and we will move on to something else. For now will stay with Taxol and monitor. I am happy with that plan.
My hair continues to grow very slowly and is still thin.. It seems to have a lot of gray in it. Oops. It is so soft. I still wear hats, scarves, or a wig when I go out.
Marian, Have they found anything to bring your pain under control? How are your Gemcitabine treatments going? I hope it works well for you.
Lily, Have you started your new chemo? Is it easier for you to tolerate than Taxol was?
I can’t believe it is almost September. This summer is going by very quickly.
Hugs and prayers from, Lynne
0 -
Lynne, a lot has happened. I was admitted to hospice 8 days ago and yesterday everything got going.I am now copy/pasting from a Facebook post as not much energy, flaky WiFi but here goes:
My temporary intrathecal catheter insertion was done early yesterday and so far so good. I was 24 hours bedrest as a precaution against headaches just in case there there was a cerebrospinal fluid leak. My low back pain was severe where the insertion was as well as my lumbar area where I have severe osteoarthritis. Once I got moving today it eased. The titration was started immediately through the external pump with two different drugs infusing. My hydromorphone and methadone and ketamine have been lowered (one through a butterfly subcutaneously and the others orally. and I will be monitored for at least 10 days. A big concern right now is withdrawal with all the narcotics still in my system. Once my doctor is satisfied that all is working, I will go back to the OR and a permanent catheter will be placed along with an embedded pump. This could take weeks but one step at a time. There is hope that next week I can get over to BCCA for chemo (I had one dose of Gemcitabine before admission). Right now no one wants my blood counts to go down due to chemo. I am so glad to have less pain and the hopes of a permanent solution.
Marian
0 -
Hi Lynne, I was wondering about the same thing - where is everybody? Hopefully, everyone is enjoying the final weeks of summer before the schools start. How is your Hb level? Does it continue to drop due to Taxol? How is your energy level post Taxol (days 2 and 3)?
Marian, glad your pain is finally under control but sorry to know that you had to go through so much to achieve this level of comfort. Hope your chemo regimen works. Yes, blood counts are always a concern. Did your MO suggest giving you any growth factors (Nupogen, Neulasta, etc)? I get Nupogen shots after every treatment and this has helped with the WBC count.
Lily, how are you doing with your new chemo? Hope it is tolerable and works for you.
I had an unexpected turn of events last week - I had to go to the ER due to extreme nausea and bloated abdomen. CT scan showed an obstruction in the intestine area, so I was admitted to the hospital for 5 days. I was on IV liquids only (NPO) and finally when things started getting better, I was allowed to start on semi-liquid food. This has left me so tired !
In addition, neuropathy in my feet is getting worse and I have been waking up all night due to this discomfort. I am scheduled for my next Taxol treatment on Friday. MO has already reduced my dose twice. Don't know what she'll suggest next. I know a few ladies on this forum had to discontinue Taxol due to neuropathy. My scans look good, bone mets are stable, liver mets are regressing on Taxol. But the side effects are draining me!
S3K5.
0
