Weekly Taxol for Stage 4

springwatch

Alexgram,

Wow and congratulations on NED!

I would love to be NED but I don't know if I will ever get there. I have two discreet lung tumours that have shrunk by about 50% after 7 weekly cycles of taxol. But as we are going to continue I will have to see where we end up with them.  I have read of some ladies who have got to NED with lung mets on taxol but they had diffuse pleural mets. 

BTW, with you on the bloody, snotty nose. Mine is being aggravated by high pollen counts at the moment. Can't stop sneezing!

WinningSoFar

I also started taking claritan for the nose problems and it hasn't done the job yet.  Very irritating side effect.  

I hope you get to NED.  I didn't think it would ever happen, then all of a sudden!  Nothing there anywhere.  I just don't want people to think it never happens.  May not last forever, but for now, NED is good. 

ShazzaKelly

Welcome Alexgram.  Wow good work getting to NED. Not sure I'll ever get there but it's a nice thought. Think I'm due for scans later this month. 

I had terrible nose bleeds initially but 35 taxols in they don't seem to feature that much anymore. After a visit to a podiatrist my feet aren't looking nearly as bad as they were, although I'm still pleased we are going into winter here and I don't need to wear open shoes. My two big toes are black and lifting off and a couple of the smaller ones have got a fungus in them yuck. I have been better looking after my finger nails and only have one starting to lift off after 8 months.

ShazzaKelly

I do spend far to much money on my nails but I think the dark polish and regular manicures have saved me from too many problems. My oncologist wants me to keep them shorter. But it took me forever to grow them this length. Maybe if I have more than 1 nail lifting I'll think about it. Don't worry I won't post a picture of my feet. 

lovelife15

hi spring watch,

2 things I would like to apologize first about my cancer met to my liver sorry that I typed it wrong & I also was wrong when I typed her2 + I am her2 -. I started on taxol and have been in it the whole time. 

Great news on 7 infusions ! 

My doctor told me that bone mets are hard to tell if lesions get smaller the scans don't show very well but I guess they can tell if there are any new ones. And none of those !!,

However my 1st set of scan my lesions reduced 30% and again my 2nd set of scan the same result !! So I am off to a good start. The fatigue is my biggest side effect, I could take so many naps during the day. I am trying to stay active, so I began walking a couple laps around the track we have her in town. I"ve only done it 3 times  so far but it feels like it's helping. 

I think my nails are to long gone to try the chilling technique, but I will talk to my doctor about it THAMKS. 

SORRY AGAIN for the confusion, and thanks again for responding to me.

Terri

blainejennifer

LL15,

Are you having trouble with neuropathy? And, if you are, have you tried Gabapentin? It really kept my hands and feet tingle free, and my fingertips never played up on me.

Jennfier

SyrMom

I've read on these boards how some of us get changes in our vision due to taxol; has anyone gotten floaters when they never had them before?

Called the MO as it put me in a total panic; getting scheduled for brain MRI and appt. with eye doc.  Want to make sure this is not mets to the brain!!  Ugh!

 

springwatch

SyrMom,

I have had 'floaters' for years. In my case it is nothing to worry about. 

My neighbour got them suddenly but his was accompanied by random flashing lights. Don't wish to alarm you but he turned out to have a detached retina. The flashing lights are a symptom. It was repaired and he is fine now. 

Any new symptom is always a worry. 

I am looking at google street view at the moment to try and work out how to get to a dentist I haven't used before because mine is away. I have broken a big chunk of one of my molars off!

SyrMom

Thanks, Springwatch.  No flashing lights here, thank goodness.

MameMe

Hi, I am wandering over here as a stage iv person on weekly taxol, coming up on my 10th chemo day on Wed. I had never seen this topic before, and appreciate it addressing the issues for this stage, like never really getting off of treatments, maybe! I would love to look forward to getting all my hair back and not having to do chemo. At this point, I do not know what is in store. Since dx in April '14, I have had two more eye exams, each of which showed regression of the choroid tumor and improved vision, so that is good. I had my first follow up chest CT scan today, and should find out results on Wed. Mr Toad's Wild Ride!!

Basically I feel more fatigue after doing daily activities, which astonishes me because I am just at home, not working, and have a lot of leeway for scheduling what I do. Partly its low blood counts, and hopefully that is all. With lung mets its hard to know when those are affecting oxygen uptake. I do feel lucky to have been in pretty good shape starting tx, and the mets I have are fairly small, tho clustered about quite a bit.  

Best wishes to all as you do this process of walking thru treatment, one day after another. Its great to have company!

ShazzaKelly

Hi MameMe Welcome to the Stage 4 Taxol group. It is quite different knowing you're not going to stop at 12. I just had no 35.i have found that my fatigue has improved over time, guess I have just got used to it.  I have scans on Thursday and an oncologist appointment on Monday. I'm keeping my fingers crossed for stable and Taxol 36 next Tuesday. 

SyrMom

Well, good news, the brain scan was negative for mets or any other problem; so off to the eye doc tomorrow regarding the floaters!!  Whew, dodged the bullet this time!  Thank goodness. 

As usual, thanks for all of your support! 

Welcome, MameMe!

MameMe

Thanks, Syr and Shazz, its good to be with others who are in the same damned boat. I will be following this thread closely. Thanks for the kind welcomes.

SyrMom

Yes, MameMe, it's good to have others that truly understand; especially when the waves get turbulent!  There is so much hope here, as well. 

ShazzaKelly

good new about the brain scan Syr. Stage 4 means you worry about the slightest little change. It's so not fair. I have my 12 weekly scan today although it will be Monday when I get the results. I hate the way my brain works around scan time. I always start panicking about progression even when there's no reason to. 

ADJ

my scans are next Thursday.  I so know what you mean.

Anita

SyrMom

That's right, Shazza.  I was a basket case until I got the report; think I reacted worse this time then I ever have.  Oh, well, too bad!!  I just hate the roller coaster ride.  Had eye exam today & everything is o.k., he told me what to watch for, etc., when to be concerned & if the other eye gets the floaters to come back for an exam in that eye too. 

I, too, get all paranoid around scan time; however, I had over 18 mo of progression, so it's not like I haven't been through it.  I'm often afraid to get too excited or comfortable when I get a "stable" report, afraid I'll somehow make up for it next time,  silly & sounds superstitious.  Next Monday I get the results on a F/U MRI of the total spine (had radiation to part of it in  2013), so far every MRI I've had since then hasn't shown much improvement.  However, now that I've been on the taxol, I'm hoping for the best. 

Hang in there Shazza &  ADJ with the scans & results; keep us posted.

patsback

I go for #19 today.  I have been having tremendous swelling of hands and feet, and shortness of breath is increasing.  Hoping to get some answers/suggestions at my dr appointment before the infusion.  

MameMe

Hang in there, Pat. Let us know if you get any useful explanation for the swelling and SOB. Its discouraging to feel punk from chemo. Its hard enough to organize one's life around the weekly infusions, let alone deal with predictable and random occurrences of side effects. Is there a pattern to when the swelling happens?

ShazzaKelly

patsback.  Hope your appointment went well and they were able to sort out your swelling.

patsback

apparently the swelling/edema is another side effect from the taxol... gave me a prescriptioin for lasix...take 20 mg every other day for now... we'll see how it works.

brigadoonbenson

I want to thank Blainejennifer and all the members of this board.  I follow a few boards on here and have benefitted from all of them but none has addressed my particular situation - stage IV/Taxol.  I sat down and read all the posts and I have learned so much.  I am going to read them again because I didn't take notes and there were so many helpful suggestions and facts that I think I can use.

I will be 70 in August.  I am married, have 3 sons, 5 grandsons and one granddaughter (3 grown and 3 young).  I live in VT. 

I  have mets to bone, spine, liver and ribs.  I was on Faslodex for about two months in combination with a trial drug.  Then I was on Xeloda for a couple of weeks and ended up in the hospital with the big D and dehydration.  Now Taxol and I have hope (some from reading this board) that it will do the trick. 

I have had 6 infusions and am on a 3/1 schedule.  I don't seem to have a problem with the pre-meds.  Steroids don't energize me or interrupt my sleep and the Benadryl doesn't make me too sleepy BUT it makes me feel thick while it is being administered and makes my legs crawly and jumpy.  I have brief bouts with neuropathy in my toes but it is usually at night and a bath or wrapping them tightly in the blankets seems to help.  I am losing my hair.  Still have coverage but I can see my scalp.  I have cut it very short and have scarves and a wig (TLC and not my favorite look) waiting in the wings.  My energy is fairly good but because of the mets in my sacrum and left hip and bone I have to sit down for about five minutes every half hour or so.  Those mets give me the most pain.  I was walking with a cane for about 9 months but now can walk but with a little hitch in my step. 

I am sure glad I found this board. 

WinningSoFar

brigadoon--my own experience with Taxol has been interesting.  I had three cycles (9 infusions) in 2011 and had a lot of strange side effects, like bone pain and shooting pains, some neuropathy and purple nails.  Had to quit due to a perforated bowel, but that was not due to the Taxol.

Then, I started Taxol again this year and have had three cycles (9 infusions) and this time, no bone pain, no shooting pain, very little neuropathy and no purple nails.  And I'm NED due to these three cycles. 

brigadoonbenson

Alexgram - How wonderful!  NED is almost The Holy Grail.  

ShazzaKelly

hi Brigadoon and welcome to our little group. I've found Taxol fairly easy and have had 36 infusions with no breaks. I know I'm very lucky to have so very few SEs and hope I can stay on it for a long time to come. I'm off now to get my scan results and keeping my fingers crossed for stable. 

brigadoonbenson

ShazzaKelly- I have been reading about your amazing stretch with Taxol.  Something to shoot for.

ShazzaKelly

Yay stable Mabel. Looks like I'll be posting on the Taxol thread for a while yet 

Aoibheann

That's brilliant news, Shazza.  Happy dance...    Hugs

springwatch

My grandson has gone back home with my daughter. We had a lovely week together. Playing in the paddling pool, riding on the new scooter (nana spoils him) and a kicking the ball around the garden. It is very easy to forget how demanding a 2½  year old can be. Happy but exhausted!!

I finally have some time to catch up.

Welcome to all newcomers:- brigadoonbenson, MameMe, ADJ, patsback and anyone I missed. Good luck to those with upcoming scans. Fingers crossed that taxol will do a good job on your mets.

Shazza, Congrats on being stable! So pleased it is still working for you. 

patsback, I always get asked if I have had any swelling when I go in for my treatment. So far I have not had any but I read that it is a complication of the treatment. I hope the lasix works and you get some relief.

I am having trouble with my port. Last week they were able to get the infusion in but couldn't get anything out, so they took blood from my arm. The chemo nurses think that the end of the line may be blocked by a sheath of tissue which is only allowing fluids/blood to pass one way. It opens when they push fluids but closes over when they try and withdraw any. A bit like a valve. I may have another trip to the interventional radiologist on the cards to see if we can get it sorted out. 

MameMe

Spring, I had that happen last week, they called it something, can't recall what. It took a zillion tries for them to get the port to work both directions. I was sore after that. They did not seem too flapped about it, but something was definitely blocking the draw. I would not want to be fooling around like that for any longer than a half hour or so. Stressful. I am eager to hear what happens with yours next time you go in.