Weekly Taxol for Stage 4
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Rose11,
Here are a few content links that you may find helpful for your mom.
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BlainJennifer, wow 44, I am just on 16 and praying I can make it to 20. I am having a lot of toe and fingernail issues and fatigue. I can't imagine 44. You are one strong woman! Bless you, Kathy
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Being bald, I have kind of a love/hate relationship with it. No shaving, plucking, curling, blow drying, etc. LOVE. Wearing a hat or scarf all the time when out - hate because they were hot. All in all, you get used to it and it is not so bad, just so weird at first. Blessings
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Thanks SyrMom and Moderator for your messages, very helpful and I will definitely look into your suggestions. Had a long talk with mum's oncologist today. She has stronger pain meds to take this time, so fingers crossed it helps!
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Mrs. Rockytops,
Here's the thing: I'm not strong. I just climbed aboard the Taxol train and stuck it out. You will too. Plan for the fatigue and embrace it. I used to feel guilty about watching too much TV and letting the house go. Ha! Not any more.
The worst part is the boredom that comes from not having any energy. So, if you have any hand crafts that you enjoy, fire them up. Knitting helped me stay sane. Good books too. And, knitting while listening to audio books and podcasts was a great way to pass the fatigue hours.
It also helps that I had two dogs who were keen to keep me company on the sofa. My family would leave for the day for school/work, and the dogs and I would claim the sofa.
Taxol is great when you are responsive to it. I'm very grateful for all it did for me.
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as not working isn't really an option for me I have managed to change my shifts around at work in the hope that it will help with my fatigue. I'm currently working 5 days, I have chemo on a Tuesday at 8:30 am and any Onc appointments are Mondays at the same time. I'm going to work Monday, Tuesday, Wednesday & Friday 12 till 7pm. The late start is easier on my system and my 16 yo daughter is great at helping with evening meals so the late finish isn't to much of a problem. Thursdays which are my worse days for tiredness I'm going to have off with no appointments etc. a whole day to do nothing. Starting this coming week, hopefully it will help.
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I'm starting to notice a pattern with day 4; not only bone pain, but the mood goes right into the toilet. Think it's the decadron leaving my system causing the crash, making everything seems overwhelming. Anyone else notice this?
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Syrmom, you bet I have noticed it. Treatment Monday, flying Tuesday until Wednesday afternoon, then starts to hit the toilet. (Love that phrase) I totally understand. I try to do most of my housework, errands, visits etc. Tues. and Wed. just in case. My Thursday morning my daughter says, she is on earth again, look out!
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Thanks, Mrsrockytops, yes, my first twinge of pain usually begins Wed. evening, lower back, usually aches all night. Then, Thurs., the pain continues along with the mood tanking. Feel like I can't handle a thing, no matter how minor; overwhelmed. Still touchy on Fri. with pain varying. Improves over week-end. It's got to be the decadron crazies. Can't imagine taking a steroid for "pleasure," no wonder those that do go nuts eventually. It's defin. not pleasurable!
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#15 completed today; WBC up & TM down! Scans next week, hoping these are positive indicators of what scans will report, although I know not to get my hopes up too far as it's a painful let down when I do.
Fatigue continues as does hip/back pain; taste seems very dulled and neuropathy is being kept in check with B6 & L Glutamine, keeping fingers crossed on that one. Legs feel stiff & skin sometimes has a burning feeling. Only have about 3 eyebrow hairs left, use to have very thick eyebrows; lashes have been gone for months, scalp remains fuzzy.
Week off next week! Yeah!
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yay SyrMom for a week off. I just had no 22 today no weeks off for me. Good luck with the scans. The Onc is booking some for me probably early next month. The hair on my head is growing like weeds, everywhere else is getting sparser and sparser. tumor markers don't show for me but everything else has remained normal and unchanged through out.
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I had no 17 taxol yesterday one more then its just Herceptin every three weeks. Got scan results yesterday bone and lymph nodes mets all gone, 2 small liver mets left but all the others gone...so great results not quite NED but nearly... my CEA maker was 352 17 weeks ago it is now 20!! Just need to keep everything crossed that Herceptin works and for a very long time. I am looking forward to my hair growing back and no more pre meds!!
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thekiwikid ... wow, what a response you have had so far. I, too, have bone & liver mets. First scan showed a reduction in size of liver mets, so I hoping to hear more of that next week. May I ask how wide spread your bone mets are? Mine are everywhere, especially and most troublesome in the spine. Don't know how hopeful to get regarding them. The CT scan is not a reliable indicator either, believe I will be having a MRI in the Spring. I am having a bone scan next week, but where I had my second opinion told me they are not reliable either as difficult to tell healing from active mets. The Pet scan is usually good at showing activity vs nonactivity, but not scheduled for one of those.
shazzakelly ... you amaze me; no breaks and no major side effects, wow! Fantastic! So happy for you. Now, I wish I had your hair growth to deal with, that's awesome too. How does it look? Fine and fuzzy like others report or is it getting back to the way it use to be? My daughter is getting married in August & I'd love to have my beautiful hair back, but not looking like it will happen at this point. Well, at least at this rate I should still be here to attend, so grateful for that.
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thekiwikid great scan results. I had scans at12 weeks and while there was a great improvement in my lung mets size wise they still use the word extensive. I have small bone mets everywhere which remained stable some looked to be healing though. Good like with herceptin.
SyrMom I have always had think dark hair it is finer than it used to be and completely WHITE
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I finished my 18 weeks of taxol last February. Had a complete resolve in my breast, 3 liver mets are now mm's, and spine met also resolved. I have continued to stay stable for the last year on Herceptin and Perjeta. My wish is for all of you to have good results also. I'm 35 so it was quite a shock when my very dark hair came back white! I shaved it several times and there is less and less white...just sayin
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Well, once again I'm not alone, I have WHITE fuzz!
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Hi SyrMom - I only have one bone met in the sternum it was the first met I had in 2012 then four moths later had mets in lymph nodes, I have not had a bone scan for a while just the CT so maybe I should have one just to check there are no more. .I think the sternum has been clear for a while but this is the first scan they have said it is healing.
Shazzakelly - you are doing so well on your treatment I hope it zaps more of those liver mets.
Kjones- stable is great I am encouraged to hear you have been stable on Herceptin and perjeta for a year.... long may it last. I have heard about younger women like you who's hair comes back white and I think it can work the other way with older women who are grey but their hair grows back dark not grey!! I don't care what mine is I colour it anyway I just want it back soon!!
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Thanks, thekiwikid.
Yes, I agree, I don't care what color it is, I just want the hair back so I can color it the way I want!! I so miss my beautiful hair, it was my one good feature and therefore, the hardest to give up. Ah, what we do to fight this beast!!
Well, this will be very interesting to see just how much the taxol does for my most worrisome vertebrae; I have mets all through spine as well as mult. other areas, but the one T10 is almost 100% which scares the living you-know-what out of me. So, this is a real test for me, not to speak of the liver mets that need to be kicked out of the liver! The spine worries me more because of QOL issues and I live alone, so without function I have no life, really. So, time will tell ... scans next week!
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syrmom I hope you see some good results from the taxol at your next scan and some improvement in your spine. Must be hard work living alone and managing all of this crap! Is this your first scan since you have been on taxol?
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thekiwikid ... it will be my second scan. Fortunately, my first scan on taxol showed some shrinkage in the liver mets - first positive response I had had in approx. 18 mo as the other tx kept failing. So, of course, I'm very grateful for that. I hoping this continues, on any level. Yes, dealing with this beast alone is most difficult. I'm truly grateful for the friends and support I have and don't minimize that; however, on a daily basis, alone, it's very tough. Can't begin to tell you how helpful these boards have been.
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I had #7 out of 12 taxol this past Thursday. I noticed that many of you have had more than the 12 treatments. I asked the doctor what may happen after I have the 12th treatment, and aromasin was mentioned as a possibility. Any thoughts on the aromasin? Are the SEs harsh (if any) I guess I won't know until I have my PET CT after the last (12th) treatment exactly what I'll be doing, but am trying to look ahead...
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Hi patsback. I don't know much about aromasin sorry. My Onc plans on keeping me on taxol till it stops working as I don't suffer many SEs. I'm hoping that will be a while. We haven't discussed what happens next. We just take it scan by scan I'm due another in the next few weeks.
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Thanks, Shazzakelly
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Pat,
When Femera failed after 4 years for me, they put me on Aromasin & Affinitor last Oct. Affinitor is the tough one since it gives you canker sores in the mouth & all over. I find Aromasin easier than Femera--I don't have much joint pain or other problems with it. Best wishes on your treatment. Hope it works for you.
Terri
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thanks ibcmets
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Had a bone scan (first one since 2012) and CT chest/pelvis (second CT since beginning taxol). The bone scan showed progression, which was not a surprise, because I had had 18 months before the start of taxol with no response to tx. However, the CT scan showed liver mets continuing to get smaller, no new areas anywhere. They then compared the prior CT bone mets to this CT and it was determined to be "stable." So, all and all I'm satisfied the taxol continues to do its work. I was offered a schedule of two weeks on, two weeks off, but decided to stay the course. I want those liver buggers snuffed out before I change anything.
Now, new question. I have a new side effect and it's believed to be from the taxol, but I'm thinking it may have been a reaction to the bone scan, although the doc says not. I have bilateral edema (swelling) of the calves and ankles. It came on within hours following my bone scan and continued the next day. Today is day 3 and so far it looks much better, seems to be going away by itself. I was given a diuretic and plan to take it if it doesn't go away by tomorrow. I have never, ever had any kind of swelling anywhere, so this freaked me out. Has anyone here had this experience either with taxol or following a bone scan?
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SyrMom, Good news on your scan. Congratulations! Have not had swelling from Taxol or bone scans. Unusual. Blessings
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Yeah syMom so pleased to read that your scan results were good and that treatment is working. Cant help with the swelling question I had no swelling on taxol. When I have my three weekly check the oncologist does always check my legs and ankles for swelling but I have never asked why....I though maybe it was because of Herceptin or the liver mets.
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Yes, by process of elimination, the onc said due to my not having cardiac issues, no kidney issues and the liver is not in failure, attributed it to the chemo. It's just that I haven't heard much from others in this regard, so was wondering. Hope this doesn't lead to me being taken off of it.
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Had Taxol #8 yesterday. Outside of the fatigue and some joint pain, I didn't have any complaints. However, I noticed this morning that most of my brows and eyelashes were gone
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