Chemotherapy for Stage IV

LynneF

Hi!
I am new to this forum and wanted to write and just say Hi and thanks for the info to everyone.  I didn't start off with chemo, tried the alternatives first.  Now I have done herceptin7 months until it didn't work anymore, Xeloda stopped working, I get Zometa for the bone mets and have done 6 treatments of Abraxane.  I am worn out (diagnosed with mets to lung, bone, spine in 3/09) you all who have been going thru this for so long - I wish I had known there were survivors like you all back in '09 to have talked me into getting chemo sooner.  I have such fear of the chemo and all the side effects.  I have been living in depression and fear for the last 2 years.

I pray for healing and I pray for TMDI to be approved (I don't seem to meet criteria for inclusion but God can make a way!)

Thanks to you all who post.

LynneF

And I am so fearful of being bald.  My hair has thinned and continues to fall out.  I fear the day it all comes out.  One of the reasons I didn't do chemo before.

BaseballFan

LynneF - What is TMDI?

gracem

Mom2acat,

I've been on navelbine for 5 months and I have no hair loss. Had my stylist go easy because it said it could cause thinning, but I haven't really even noticed that. Here 's to good hair days and even better results on the navelbine for you!

Suzanne 

Anonymous

I did not lose hair on Navelbine....only real SE for me with that one was constipation and a little neuropathy. 

Heidihill

Jenny, 81% tumor reduction is great!! I'm sure the bone mets will respond as well, if they haven't already.

I had TAC for 6 cycles which brought me into clinical remission. Based on my scans and the pathology report after mastectomy they did not do more rounds of chemo. Radiation and hormone therapy followed. From what I've learned after the fact TAC is suggested for those with excellent performance status, who are young and with limited metastasis. Maybe you need to be ER+/PR+ as well. I was told my treatment had curative intent, which means it could very possibly have cured me, although they'd never know until I died of something else 20 years later. (Or not.) Even then they still wouldn't be sure.

dellmonica

Does anyone have experience with Gemastar/Carboplatin for Stage 4 breast cancer? 

dellmonica

Hey laurajane:  Did you ever get the Parp Inhibitors?  I am going to start that same trial and will be in the Lottery also - but I have been told I will start the Parp in 1-4 weeks.

Also - wondering how did you handle the Gemstar/Carboplatin?

Anonymous

Is gemastar the same as gemzar, or gemcidabine( am not sure, but that is the real name of gemzar?)  I am now on gemzar, but don't get carboplatin with it....just xgeva for my bones. 

BeckyOD

Hi dellmonica, I had Gemzar with carboplatin for 4 months when I had a recurrence to my lymphnodes and it worked wonders. Put me in remission for nearly a year. When the cancer came back it was in the liver and bones and we tried it again - but it didn't help even a little bit. Are you still stage 2b? 

Anonymous

Question for you on the Gemzar....do you get flu like symptoms with it?....after the last two treatments I have had an elevated temp as well as achiness all over and it lasts about a day and comes on the Friday after I have my treatment on Wed.  The nurse told me it was most likely from the Xgeva which replaced my zometa...she said like zometa it causes joint aches....Well, I never had any joint aches or any SEs with zometa and I do not get Xgeva every time I get Gemzar....so I am thinking it is the Gemzar.  Also they told me I would possibly get diarrhea and I am the exact opposite on that one and am taking SennaS every day so I don't get terribly constipated. 

mom2acat

I've had my 3rd Navelbine today, next week I get the week off!

No hair loss so far. The biggest side effect for me is constipation, I have to take Miralax or Milk of Magnesia for a few days after each treatment. I have gastroparesis, so I can't eat foods with high fiber, and I can't take Metamucil or anything like that.

Anonymous

You wont lose you hair on Navelbine....mine didn't even thin and boy I know what you mean about the constipation....I took 4 sennaS every night. 

Annie62

Marybe,

I'm currently on Gemzar and Abraxane. I got mild flu-like symptoms after the first treatment or two but the onc told me it as the abrazane. I too got constipated, took Senna-S and then got explosive diarrhea. Not fun. Next round I skipped the Senna-S and was not happy. This time I took it the night of chemo only and it was a bit better. Next round I'll try the night of chemo and the next. Hopefully that will do the trick.

Annie

Anonymous

I did abraxane for 22 weeks straight and never got any flu like symptoms so in my case think it is the gemzar, but who knows.  We all react differently.  Abraxane was very hard on me and finally after I had every SE in the book and many that most don't get, I told my onco I had it and was quitting...BUT I will say it worked...shrunk my tumors and took my tumor marked down.   I hope you are doing OK with it.  Now with this gemzar I am having very few SEs so am wondering if it is working....the SennaS does work for me IF I remember to take it every night.  Chemo brain I guess!!!  Can't remember to do much unless I put it on the list of things to do today....sort of sad really.  Maybe you should just take plain old senna, not the S. 

PS like your dog.

Annie62

Aww thanks Marybe. I like yours too!

BreastCancerDiva

Hello to all.    I am new to this thread, though not new to breast cancer.   I was diagnosed initially in November, 2008 and went through chemo (FEC and Taxotere), DMx, radiation and then reconstruction with the wonderful doc's in NOLA, ending in Dec 2009.   Thought I was home free!   August 2010 brought the Stage IV Metastatic diagnosis with mets in my lymph, liver, bones and maybe a few other places I don't pay attention to.  

I had previously taken Tamoxifen (clearly not working for me!) and tried Femara (no good).   I started chemo with Taxol, Avastin (3 weeks on, 1 week off) and Zometa (1/month) in September.   I also had a pleural efflusion in my right lung, which was resolved by a video-assisted thoracotomy.   Recovery from the surgery was tough, but it worked.   I've had very few side effects from the chemo and am getting close to the onc making a change.   I'm a little nervous about changing what's working but trust my onc.  

I thank each of you brave women for sharing your stories and encouraging each other.   I figure that someone has survived every kind and stage of cancer.   I don't have to be first.   Just next. 

Namaste.

Anonymous

 BCDiva, Where are you in Ohio?

dellmonica

@ BeckyOD:Well my doctors said if I came to him newly diagnosed with the current symptoms and PETSCAN results I would be stage 4 now.

BreastCancerDiva

Hi Marybe.    I'm in Dayton.   I work on the south end of town though!   We could get together!

lindaa

I will be starting gemcitabine with MK1775 Wee1 inhib trial next month.  i can't find much about it other than the basic trial info.  Anyone heard of it?  I have to be off chemo for a month before starting and I am very freaked about that - my cancer moves so fast.

Lynne - so sorry you are in this stressful, fearful state.  No one wants to be here for sure.  Chemo is very doable.  So you may have to spend a few days on sofa here and there, but you can do it.  If SE's get too bad, your onc will move you to something else - they will not leave you in a state of suffering.  As for hair, i'll bet you'll great bald.  I don't use a wig, just caps and hats.  Your hair or your life?  I know many women who are almost bald and they never even had cancer.  My best to you.

debbie_58

I am new to this site. I had a tramflap in 2004 with no rad or chemo as high grade DCIS and as lymph nodes where clear I was told they had got it all. July last year a recurrence in same spot and mets to liver. I had 6 ACs which worked well, although in reading some of the comments my tumour markers are back up to 3600 after ACs got them down to 260, which even 260 seems to be high. Tried Femara - no good for me and now on Xeloda 6th day? Has anyone else had similar? and what sort of chemo helped please?

Anonymous

Debbie Well, my tumor markers are now probably around 1,700    I say probably because they have not been run for at least a month and last time they were 1,4something, I forget, but I know it was close to 1500 and I found this rather alarming,(since once we had them all the way down to 18!!) but my onco says not to worry about it....many factors can cause the numbers to go up and they are not conclusive and since the cell search is zero(circulating tumor cells), I should not worry since that is more important.  Easy for them to say, don't worry, isn't it ? Right now I am on Gemzar and get Xgeva (used to be zometa) for my bones.   I have three tumors in my liver and I guess we wont know if the gemzar (gemcitabine) is working until it is time for scans again.  I have a friend on Xeloda and she is doing very well on it....few SEs if any and numbers are way down. 

Linda, what is the MK1775?

debbie_58

Thanks Marybe

Guess I really just have to wait and see what blood work is like in a couple of weeks. Must be time for some good news. In 2004 when I had tramflap my tumour marker was 3.8 so maybe I will opt for hard out AC lose my hair again and try and get them down to 2 figures instead of 3 or 4. The silly thing about all this is that apart from being tired a lot I feel fine. On AC I don't feel fine but can handle it.

Thanks for your reply

K-Lo

Hey ...markers?   I never heard of em.   And I'm 14 years with breast cancer AND a nurse.  HELP.

Anonymous

There is a blood test CA27.29 which is tumor markers in layman's terms.  I believe anything under 30 is considered normal.  Some oncologists don't even do them and it is not always an accurate test, BUT in my case when they have gone up it usually means I have new mets or the tumors are increased in size. 

lindaa

I will see the trial doc this week to find out more about the MK1775 Wee1 drug.  I think it targets the P53 gene which is supposed to be a tumor supressor  gene but can go haywire and help the cancer instead.  Saw the genetics counselor today and she was talking about a Cowden syndrome because there is a lot of thyroid and diabetes in family.  There is no targeted drug for it though, but I will spend some time researching it anyway.  She also mentioned a 'PTEN' for triple neg, but again  no drug for it.

I have no idea what my tumor markers are and don't want to know.  I have bumps I can feel so already know how knee deep I am in this.

Anonymous

Lindaa, I am sure you get sick of hearing this, but think positive...maybe the bumps have nothing to do with cancer.  I had a whole row of them along my incision line and it was an allergic reaction to the polyeurethane covering on the implant.  I am going to ask my onco about the 1775 drug

fionaz

Hi i am new to this site was diagnosed with bone and lung mets in july 2010 have er+ grade 4 breast cancer have had one course of chemo was given a 2-5 year life span am degtermined to fight all the way ladies am currently taking arimidex zometa and zoladex feel much better i feel alive and am trying to make the most of each day are there any ladies with similar diagnosis who love life and are long term survivors? anybody out there i feel like i am coping alone please reply x x

Anonymous

You are not alone at all Fionaz. I was diagnosed in 98 with mets to bone, left lung and a suspicious area in my liver which did not actually change until several years ago.  I have been on many treatments and will be on something the rest of my life, but I am actually doing very well and am still enjoying life.  Hearing you are Stage lV and especially when they give you a time frame like that (they should not do that in my opinion...we are all different and we are not statistics) can really be devastating, but I got less scared as each year passed and now I can truly say I don't even think about cancer other than the fact it is just a part of my life ....can't say I don't have times when I am still scared, like scan time and waiting for results, but that is normal.  Fear of the unknown is always scary.  These boards are a great source of information and I am sure you will get a lot of support here and most definitely will find that you are not alone.