Topic: Chemotherapy for Stage IV

Jun 27, 2012 06:13 AM soleil505 wrote:

Naniam

I just hope the Abraxane does the job for you.  I had some rough spots with the neurapathy, too.  I did force myself to walk every morning and evening.  I believe it helped.  I walk about 1.5 miles, not very far.  I walk to the lake and back.  There were a few occasions, once at the lake that I wondered how I would make it back , but I did.

Today, is the first day I have woke up with no swollen mouth or cough from the allergy.  Its so wonderful!  Gosh, I hope the best for all.

Jun 28, 2012 04:47 AM Marybe wrote:

Sue,   I saw my sister just this month....she and her boyfriend flew in for my Dad's 90th birthday.  I think the last time I was out there was maybe three years ago....I know I had not lost my hair yet from looking at a pic and really think the way I was wearing it then was pretty ugly, but of course did not think so at the time.  I also weighed about 15 lbs less.  So what I lost in hair, I gained in pounds.....multifold......LOL!!   

Portland is beautiful and although my sis does not really have a green thumb, she has the greatest luck with plants....her butterfly bushes are like trees and she's got cone flowers coming up through cracks in her driveway that just reseeded themselves there.....it is amazing.  And she's got wisteria growing and it is lovely.   When she was here the beginning of June, they were loving the OH heatwave.....said summer had not really arrived there yet and that her plants were way behind in blooming.  So maybe you will be there just in time for everything to be thriving.   Are you going to the rose garden?  I know you will have a wonderful time.  

Soleil,  Hope you continue to improve every day.    

Jun 29, 2012 06:02 PM MemaSue56 wrote:

Laura - 7 years....that is very very good.  I hope they find a cocktail that works for you and on this thread you can usually find someone who has had one or more of what you are trying at some point in their treatment.  I was stage IV w/bones mets from the start, responded well tho to TCH (taxotere, carboplatin, herceptin).  I am TP so still on herceptin drip every 3 weeks and aromisin pill nightly.  Now scanning every 6 mos instead of every 3, but will continue to get MUGA scan every 3 mos. because of herceptin toxic to heart.  Will be on it minimum 3 years or longer, guess it depends on my tolerance and recurrances.  I think I am in a minority as I did NOT have a BMX.  Didn't want to give up any quality time healing from surgery.   So, it's been a journey, but I remain upbeat, positive and thankful for every day I'm still breathing.  HugZ and Prayers!

Marybe - Brother says the blooming is going on now, I will arrive kinda mid-cycle, but still be able to see many beautiful flora.  I will mention the rose garden as a 'must see'.  Thanks for the tip!

Positive, Healing energy and lots of prayers to all!!

Sue

Jul 1, 2012 09:00 PM, edited Jul 1, 2012 09:03 PM by Marybe

Laura,  I think you were asking me what my journey has been like when you said Wow, 15 yrs?  Well, let's just say it has been a learning experience.  When l lst heard Stage lV, I didn't even know what it was.....after I found out, I thought it was the end.  But obviously, it was not.  Stage lV is not an automatic death sentence, but it is a very scary place to be.  I think your onco is wrong in telling you three years at the most because no one knows that for sure.   My onco told me he didn't have a crystal ball when I asked him how long he thought I had.  There are a lot of women on these threads who have been Stage lV for many years.

Yes, you will be doing chemo or some form of treatment the rest of your life, but there are many many treatments out there and they are also coming out with new ones every year.  I did many that failed...some of the ones you did... I didn't see navelbine or Xeloda or Halaven or Doxil to name a few on your list of chemos so I am sure there are still many out there that could possibly work for you.  I did about 6 different ones in a row that did not work and my tumor markers kept going up up up, but now they are going down and I have hopes that this chemo will shrink my tumors.  It won't work forever, none of them do, but when we find out it isn't working, I am sure there will be another one for me to try.  And I am not ready to give up so yes, I will just keep on doing treatments until we have exhausted every possibility there is.

I know I am extremely fortunate in that I have for the most part not had any really horrible side effects.....not that it's been fun, but I have been able to keep working, feel good most of the time and have been able to live what I consider to be a "normal" life.  Instead of thinking that I am dying of cancer, I prefer to think I am living with cancer.  And it can be done, so don't give up and if your onco does, go find one who has a more positive outlook and isn't going to give you a expiration date.  They are doctors, not God.   

Jul 2, 2012 07:53 AM Glenna_E wrote:

When I was diagnosed with mets in the spring of 2008 my onc told me I could easily have 10 years or more with all the new treatments that were out there. He won't give me any timeline ever ..... everytime a chemo has to be switched he reinforces that there are plenty of things to try. I like that attitude! Yeah, it's still scary when it's scan time and I find that something isn't working but I know when I go to see him he'll have something else in mind for me to try. Someone on one of the threads said we don't have an expiration date on the bottom of our feet. I loved that .... and it is so true. So, Laura, you just keep on keeping on.

Jul 3, 2012 10:17 PM Glenna_E wrote:

Anyone hear from Kimber (USAF mom)? Her last post was June 6th. She did say DH was printing out this thread for her so Troy, if you're reading this, please let us know how Kimber is doing and let her know we're thinking of her. HUGS!!!!

Jul 11, 2012 04:22 PM MemaSue56 wrote:

Marybe - OMG!  I kno that feeling.  I had my EF drop below 50 in August (middle of my chemo regime).  Within 2 days I was back in LV to see a cardiologist.  He did the echo, ekg, etc.  Made me feel great emotionally, as I, at this point, had no physical signs either (July I did but was fine, go figure).  Anyway, as you kno, herceptin is toxic to this EF valve or whatever it is and if it drops too low they won't treat until it comes back up.  Mine came back up on it's own so I did not miss any treatments.  I still get my MUGA every 3 mos too.  But now I only get herceptin every 3 wks instead of weekly like last summer.  Hope they called you today and you have an appt with the cardio doc soon.  Keep us posted.

Strange you should mention the edema problems as I too have been dealing with that for many many months now.  My trip to OR was wonderful, but most telling, on this skin prob, is my brothers wife is a nurse (CNO), asked me if I'd had a shingles shot.  I told her they won't give to me as I'm still a smidge under age 60.  She said to go back and insist, that in my situation I am more prone to get it, something about my skin ailments and the bc and the meds n stuff.  Now wish I'd paid more attention.  Think I better do some research.

Will post more later bout my vacay...in meantime....Love and Prayers to ALL!

Jul 13, 2012 09:24 PM SusieMTN wrote:

Hope someone see's this! 

I am going back on Chemo next week and it will be Lapatinib (Tykerb) and I am wondering how others have done on this drug.  Some sites say hair thinning and others don't mention it.  How bad was your diarrhea? 

Susie

Jul 14, 2012 01:36 PM lilylady wrote:

I got some bad scan results on Fri so i will be leaving Xeloda/Tykerb to move onto Perjeta/herceptin/Taxotere. I have just touched base with formygirls-she started this last week. Just aproved June 6 so we will be lonely til it gets more widespread. I hate the thought of the chemo room-oral chemo is really convenient. They have told me to expect a minimum of 3 hrs. because i am the first in his practice to get this they will be running it really slow. Also back to getting Echos. They have me sched for that on Mon. I stopped herceptin in Jan and was still in the high 50s so I don;t think it will be a problem.

Dreading the Taxotere thing-mostly because of the hair. Some of my hair didn;t come back from last summers bout with this and I saw someone started a thread to say how many times can you lose your hair before it doesn;tcome back at all. I sw MaryBe's latest picture and she look so cute with no hair-I look like my forhead is a mile long. I love my cute super short hairdo. Guess I will go get me some new ballcaps this weekend.

  Also maor food bingeing going on before the taste buds crash.

Jul 17, 2012 04:08 PM Marybe wrote:

Susie, I don't know about Tykerb, but LilyLady does. 

Sorry they have to change your treatment LL, but hopefully this one will work.  It is smart that they are doing it slow at lst so they can be on the lookout for any reactions.  Thanks for thinking I look cute with the supershort hair....it's about an inch long now.   I just hated the wig and the bandanas so much that the min. I had a shadow of hair and didn't think I would scare people, I ditched the coverups. 

Sue...did you get the edema checked out?  The cardiologist thinks the flying brought mine on.  Today my ankles are perfectly normal and I didn't even have my support hose on because I knew she would want to see them.  I have been trying to watch my salt intake....that is the one part of my taste that is sort of screwed up this time, can't taste salt and keep adding it. 

Thanks Soleil. When do you start treatment? Did you have a nice time with your GD?  

I think I got an encouraging report today....after giving me a thorough exam and reading the report she feels that if it is accurate, I am closer to the 50 end, than 45.  She said they have different ways of figuring it out and if you do it on this percentile thing, it comes out 50.....that is still a drop however.  But she thinks if I take the Rxs she is going to try me on.....very low dose coreg and lisinopril, they will help my heart pump stronger and that since I have been so successful with this chemo, that we will do another month of it (providing the onco goes along with this) and then in one month, I have an appt to see her again as well as an appt for an echo the same morning.  If the EF has dropped lower, then it will for sure be time to quit the Adriamycin.

So I am hoping tomorrow I get chemo.  I keep thinking wow, I can't believe this is me saying this, I WANT CHEMO!!

I asked her when and if I go off the Adriamycin if my ejection fraction will go up and she said she's seen it go up on herceptin, but doesn't know about Adriamycin. She also said that normally you don't see it this early and she would call mine acute...said it is more common for it to show up after 5 - 10 yrs.   I said well, I am not worried about 10 years. 

Now I have to go back to Kroger and get my Rxs.....I guess I left them in my shopping cart and someone turned them in and they are holding them for me at the front desk.   Talk about chemo brain!   Guess it's a good thing, it wasn't a pain pill or something...they might have kept them. 

Jul 18, 2012 12:25 PM, edited Jul 18, 2012 12:45 PM by Marybe

I am at the oncologist's now and I AM GETTING MY TREATMENT!!!    Guess you probably gathered that I just learned how to use the little emotion faces.  The PA's happy, the nurses are happy and I am happy....but I think hey are happy because I baked cookies and brought them in.

Well, you know LilyLady, it's sort of a catch 22....I don't want congestive heart failure, but I also don't want cancer, although I know I am going to be dealing with it the rest of my life.  I like the way my onco sends me for tests every time I have a symptom, even though I knew when they made me go for a doppler a few weeks ago because of my edema that I did not have a blood clot...have had enough of those to know what they feel like.  And I do feel better that the cardiologist thinks we are still safe to go on with the chemo, but at the same time I would have been really unhappy if she had said I should stop treatments.....of course that possiblity is still in the horizon, but I am hoping by getting treatments for another month, my CA 27.29 might go down to 100 something.....the 200s for sure.  

I am hoping now I don't get an obnoxious cough with the lisinopril, but if I do, will deal with it.  

Have a good day everyone.  

Ignore below, it wasn't doing anything so I accidently posted twice.  

Jul 20, 2012 01:08 AM, edited Jul 20, 2012 01:12 AM by Naniam

Here it is very late and I am reading and trying to catch up.  Needless to say with Oxy and some Ativan not doing to good.

First I was very lucky when I fell I did not break a bone - fully expected a hip or back fracture.  I had some pretty large blue places on my arm and shoulder. 

Ladies, I don't know what to think of the Abraxane.  I now have 6 doses behind me.  This is my week off.  I start my last series on Monday along with the wonderful Zometa.  Both times on my week of, by the end of the week my ankles are swollen that I can't see that I have ankles and am swollen to my knees.  Left seems to be worse than the right.  Then I start Abraxane again and it goes away.  Strange, I think very strange - does anyone else have this?

Also, my pain level has really increased.  Vicodin long gone.  Was placed on one 12hour Oxy twice a day and then Oxycodone  2tabs. q6h. for breakthrough pain.  Monday, we had to up it to two12hour Oxy.  I told my oncologist that I thought if the chemo was working, shrinking the mets, that I would have less pain, not more and would not keep having more sore sports.  He told me that was true BUT he didn't think I had been on Abraxane long enough- so do the next three cyles and we will scan.

I have been having some vision problems, being off balance, headaches, not feeling together in my head - not sure how else to describe it.  He tested me 3 weeks ago and did notice some neurological issues but think he felt it was due to the spine and the extensive mets.  This has gotten worse and he wanted to do a brain scan.  Well, my husband had just told me something that had been going on with him for several week and that scared me so was more focused on him getting attention (he has had colon cancer).  He checked out fine but honestly with all the pain and then worry about him, I emailed and ask him if I could postpone the brain MRI until we met again on the 23rd and we could re-evaluate.   I can't decide if I get tired and I have off balance problems and then that makes me nauseated or I get nauseated and it causes me being of balance.  The vision problems is not like all the zig zag patterns of a migraine aura - a bit different but vision still messed up and I get a very light headache and nausea.  But coming home and reading about brain mets, it says that "my type" of BC is not one that normally goes to the brain. 

I do ok with the Abraxane until that 3rd treatment - boy the mouth problems.  Yes, I have the mouth wash and even the Duke's Mixture - just miserable with tongue feeling horribly burned and sore in the mouth for about 4 days before it starts to improve. 

Not sure what I think of Abraxane - honestly with the increased pain I have had, it really makes me wonder if it is working.  I guess only the scans will tell.  Will start that series on Monday but really am interested if anyone else had the swelling/edema of the feet on the week off and the mouth sores shortly after the 3rd treatment.  My pain is lots worse and has really affected my QOL

On a positive note, I had three lades that I met at BCO almost 7 years ago come visit for two days.  One lady was here for two nights, picked one up at a meeting place yesterday and took her back to the airport today and then the third one lives in Va and came around 10:30 this morning and everyone left around 3:15.  It was wonderful.  I had met them all before.  People look at you really strange wondering how on this earth you can form that kind of friendship over the internet, how much do you really know about them, etc. but we all just clicked and stay in touch daily.  They "get it" mentally, physically and emotionally.  No matter how much our family loves us - they don't understand the daily struggles. 

Like all of you, you get up and live your day as best you can.  Cleaning my house has certainly changed.  It is spread out over a few days instead of doing it all in one.  Fatigue on Abraxane for me has been tough but then chemo just seems to bring me down to size and hit me with fatigue.

Love to hear about the swelling and mouth sores.  Since i am still so new at all of this, I don't know lots about the other drugs some are starting - something tells me I might.

My oncologist only says that this is a chronic disease and can be treated successfully for 10 years or more.  I take my scans to my radiation oncologist and he is a family friend and when I say 3-4years he says he feels that is reasonable.  My DD takes my scans and reports (she is an RN another state) and shows her doctors and they tell her 3-5 and talkes to her about the pain.  No she didn't tell me, she was trying to help my husband understand what was coming.   So, I do think they have "ideas" and I am ok that I know those things.  I don't dwell on them, it is up to me to fight - just that so far since I was diagosed we don't seem to have the bone mets near stable or under control.  I had widespread, extensive bone mets when discovered and it has only gotten worse.   Looking for a good scan report in 3 weeks !

Late and I am tired from having my friends here - they weren't any trouble, house is to quiet without - just the level of energy that I seem to have lost. Haven't been on the site much at all - to much going on.  Will try to check in more frequently but I feel inadequate in helping others - I seem to be asking for lots of help myself.  2 1/2 months and it will be a year since I learned I had metastatic disease. 

Overlook spelling and typos - to tired to do a check.   Blessings ladies,  Brenda

Jul 20, 2012 06:30 AM soleil505 wrote:

So sorry you are having such a tough time.  The Abraxane worked for me , but yes, it did cause alot of pain.  I"m going back to it soon....not thrilled, but then again, i like being alive  :)

So, yes the mouth sores were terrible!  Third week was the worst.  They persisted even through week off.  Yes, the ice chips did help me.  I used the mouthwash twice a day .  On bad days, added the ice chips.

The neurapathy wasn't as bad as you described but I had some swollen ankle and leg days. 

Side effects are cumulative, for me the fatigue peaked during week 3.  My blood counts went down that week and I was very tired. 

I had increased back pain, went into the scans with absolute certainty that the Abraxane was not working.  But it was.  I've been off for a month now.  The back pain is gone.  So, it was the chemo causing the pain not increased mets like I thought..

I hope it works for you .  When are your scans?

Jul 20, 2012 08:08 PM Naniam wrote:

Thanks ladies.  I got up this morning and I  still had lots of swelling in ankles and we can add my hands and face to that also.  I did call the oncologist as this happened last time, week off Abraxane, but not to this degree.  I was told that this is not a side effect of the Abraxane - that pain, muscle aches were part of the effects but not this.  However, am reading that some of you also had this problem.  Today, was also the first day I remember being told that the Abraxane could make my pain worse.  So far my nails have been fine - no problems.  I was told that could be a problem. 

 Start my 3rd series, before we scan, on Monday.  I was told if I was still had the swelling/edema, they would probably give me some Lasix and because of being off balance, nausea would probably require the brain scan. 

Ladies, I know you never say something can't happen when you have mets but from all the studies done, reading recent studies and watching/listening to online conferences, I do not have the form of BC that will normally progresses to the brain.  

Just a bit frustrated - this happening on the week off just doesn't make sense to me.  I haven't had any problem like this during the 3 weeks of treatment.  Thanks for sharing your experiences - this was all told to me by the PA today - at least I feel I have some input to give to the oncologist on Monday.     

Jul 21, 2012 01:14 AM soleil505 wrote:

Swelling of face could be the beginning of allergic reaction.  Not sure about your ankles, but I know the side effects still play evil games during off week.

I'm working with an allergist now.  She said that quite a few people get reactions from taxols.  Abraxane is a taxol. Reactions vary in levels of severity.  Maybe you are having a reaction.  Scans are soon, that is good.  I had mine early.  Doc felt that it would be good to see if Abraxane was working before either pulling the plug or figuring out a solution.  i had good results so now I'm working with an allergist.  Hope you have good results too.

As for the increased pain, I had that too.  I was walking to town today like myself.  As I walked I realized I was feeling like myself.  Small happiness.  When I was on the chemo, I was in quite a bit of pain and walking was difficult.  It took me twice as long to make it to town and back as it does now.  I do realize now that much of the pain I was experiencing was from Abraxane. for me, it caused pain, mouth sores, dizziness, and fatigue... blah blah blah... Still, I'll go back to it soon because it was beating my cancer.

Funny, some people have no problem with this chemo, others do.  I'm sorry you are having so much trouble.  Hope they can figure it out for you.  Take care