Topic: Chemotherapy for Stage IV

Apr 13, 2010 04:25 PM bygracealone wrote:

Mets at dx were spine top to bottom, hip, pelvis, right femur which required IM rodding surgery
nodes, lung and liver    post surical blood clot behind right knee

no mastectomy

After failure on AI clinical trial began Abraxane (nab-paclitaxol), 3 wks on one off.
SIde effects crept up on me slowly. First hair loss beginning with head and eventually no body hair at all. Next finger nail and toenail issue, then facial edema and finally edema in legs and feet.
Furosimide was prescribed with little effect on the edema. Also had fatigue and chemo brain.
Onc stopped chemo for two weeks at beginning of 6th round due to edema and nail side effects. Did one more round and then stopped.

First scan after 4 rounds showed shrinking in many tumors and the rest were stable. Last scan showed some shrinkage, some stable but progression again in liver mets.

Now back on AI's.

Sandra

Apr 14, 2010 07:43 AM Fidelia wrote:

Just like to add my thanks - first to Lowrider54 for her obvious love of organisation and to the wonderful moderators who manage this knowledge resource for us all. This site has helped enormously in providing information that sometimes my treating oncologist wasn't aware of and the invaluable personal experiences of so many all combine to make this a unique source of knowledge, encouragement and inspiration.

Thank you to all

Fidelia

Apr 15, 2010 06:59 PM undecided8 wrote:

Thanks for starting this thread. Just curious what kind of chemo everyone is doing now? I was re-diagnosed on 2/4/10 with bone mets. I'm currently doing Taxotere/Herceptin/Zometa x 4, so far, he hasn't added on anymore taxotere but the Herceptin will continue for at minimum another year. Not exactly sure about the Zometa. I'm not sure why some people with bone mets do chemo and some don't? I only finished my Herceptin last June and then by September it was back. I had broken my hip back in Sept. and the orthopedic was ASSURED it was not cancer. Finally after switching orthopedics the 1st MRI caught that it was bone mets. I have it in the femur/hip,rib,humerus/and a lymp gland above the clavicle. I'll be glad when the taxotere is over, it's been quite a bit harder than I prepared myself for. I thought it would be more like the Taxol I did before. So far it has not been even close to it. Take care and everyone hang in there!

Suzanne E.

Apr 16, 2010 09:28 AM Marybe wrote:

  My case has not been typical in treatment....at least I don't think it has. I had my initial dealings with BC in 1990 when I had a modified radical mastectomy with no chemo or hormonal preventative after....tamox was still being tested and all of the 19 nodes they tested were clear so it was decided to not do anything and I was told IF my cancer did recurr, which they doubted would happen, they would use tamoxifen as treatment which is what they did.  Due to the negligence of my onco who did not listen to me when I complained of pain in my breast bone area for about 2 years, by the time they did do scans in 98, my cancer had metastacized to my sternum, left lung and there was a spot in my liver.  So I changed oncologists and was immediately started on pamidromate (aredia) due to the bone involvement and stayed on that until they came out with zometa which I still get today.  And they did start out by treating me with tamoxifen which worked for almost two years and did shrink the tumors.  Then we moved to arimidex, but only for a few months because my ocno heard you got more dramatic results with aromasin.   We did get dramatic results...my tumor markers went from the high 500's all the way down to 18 and I stayed in remission on this medication for almost four years. When the CA 27/29 started going up again, I was switched to faslodex.   Then there were some new mets and the one in my sacrum caused me pain so I had radiation which got rid of the pain.  I then did oral chemo cytoxin/ methotrexate which I found out later was this megametric? , metronomic??  (am sure I am wrong on this name, but it is the type where I took cytoxin every day and the methotrexate just certain days)therapy they have discussed on these boards.   I was also doing avastin while on it.  The oral chemo did not work and I developed a new place in my liver and also some new places in my ribs and spine, plus some of the tumors already there increased in size.  Oddly enough I have never really had a lot of problems with any of this and have continued to work full-time during all my treatment.  The next treatment was the REAL stuff which I had managed to avoid for a long time since I responded so well to  AIs with so few SEs.  I began Abraxane/ Avastin in Feb 09....had abraxane weekly and avastin every other week and continued with my zometa once a month.  The first three months were tolerable, but by the 22nd treatment, I had had it and stopped chemo the end of July 09.  I was still working since I really did not get tired until about Friday afternoon (had my treatments Wed AM) and could catch up on sleep on the weekend.  However, I did have neuropathy in my feet, lost all my toenails and my fingernails were in very bad shape and infected, but it was when the neuropathy started in my hands that I decided I could not risk getting it there since there is always the possibility it will be permanant and my hands are my job.   So I quit or as my onco called it we were taking a break.  I also got permanantly blocked tear ducts out of the deal and had tears streaming down my face all the time, but surgery corrected that.  Actually just about all my SEs are gone now...hair grew back, taste returned, finger nails are almost back to normal except for my thumbs, eyes are OK except for eyelashes that grow inward and have to be removed, and the neuropathy is maybe 1/2 gone from my feet...toes sort of burn and tingle alll the time so I know they have feeling again.  After quitting my chemo I went to MDAnderson and got some new treatment options there which my onco does not really agree with, but at least we have been trying them and it has allowed me to continue my break.  We tried the aromasin again and it failed....CA27/29 has gone up 200 points and tumors showed increase from when I stopped the chemo....(Oh I will say as hard as it was on me, the abraxane did shrink all my tumors so it does work).  The one I am trying now is megace and about the only SE I have with it is weight gain, but I am keeping that at bay with WW and probably eating healthier than I have for a long long time.  I will also add that since I quit the chemo I have been feeling better each and every month, am back to staying up half the night working on little projects am very active, feel great and everyone tells me I look great and I am dreading the thought of going back on chemo.  However, I know that is most likely what I am going to have to do since my onco seems to really know what he is doing (even the onco in TX said that the fact I have been Stage lV 12 years attests to the fact I have a good onco) and he said he has every reason to believe he can once again get me back into remission, but it's going to be chemo that does it.  So I am anxiously awaiting to see what sort of treatments you all have done that work.  I loved the AIs but am afraid I have exhausted those.  I went for a consult regarding IMRT and radiofrequency ablation, but both my onco and the onco at MDA felt that would not be an option for me.  I will be having scans again this month and they tell the true story.

    All I can say to you Vinnie is Stay strong.....you chose a great name.  I have been Stage lV for 12 years and there is a lady by the name of Kathy Rich who started a thread and she has been Stage lV for 17 years and is doing fine.  The trick is getting the cancer under control....they can't cure it, but I have found it is something I can live with. Who knows you may be here when you are 70 and will be having fun with your children's children.  We just never know, but I for sure don't feel like I am on the way out myself.  By the way, I love your hair and cheekbones.

Apr 16, 2010 11:17 AM, edited Apr 16, 2010 11:25 AM by Marybe

 Is it Ok to give names on here?  AIs are aromatase inhibitors....hornomal, rather than chemo.  There is a thread called Abbreviations for Newbies I think....check it out.  I don't know all of them myself. 

Apr 16, 2010 01:41 PM lorrhaw wrote:

I was just diagnosed this last January and had my first chemo on 3/22 and my second this past Monday the 12th.  I am scheduled for 8 rournds of FAC (Fluorouracil, Adreiamycin and Cytoxan) each spaced 3 weeks apart.  My last treatment is scheduled for August 16th (but who's counting).  Like Marybe, I am being treated at MD Anderson where they wanted to take a more agressive approach than the local doctors here in Vegas recommended.  I am part of a clinical trial at MD Anderson which involves chemo, followed by additional surgery,  radiation to the breast and then finally high dose radiation to the spinal met.

My first chemos went relatiely well with minimal side effects which included a little queasiness, a slighly exxagerated gag reflex and some foods tasting weird.  Overall I can't complain,

Since I am so new I am so grateful to hear from those that have been around for awhile. 

Apr 16, 2010 04:57 PM Marybe wrote:

   Ok, I know I posted this a few mins ago, but it's not on here.  Anyway, I was commenting on what you said Elaine and said that I could see your point and that maybe they can start other threads for specific treatments or perhaps you could do it yourself.  I did that when I had questions about megace and also my tearing eyes and when I was starting abraxane and wanted to know what to expect.  I only came on here because I am interested in seeing what treatments there are for Stage lV and want to know how they worked and what the SEs were.  I have been at this a long time, but am not very experienced when it comes to chemo and I know that there is going to more of it in my future if I hope to get back into remission. 

Peggy, I sent you a PM.  Do you know how to retrieve them?  Go up to where it says Private Messages and if there is a number in the box that means you have that number of messages and you click on it and then you can read it. 

Apr 16, 2010 07:48 PM Marybe wrote:

   Would taxotere and abraxane fall under the Taxol category?...they told me it was the same family. 

Apr 16, 2010 08:13 PM dreamwriter wrote:

FEC

Apr 17, 2010 11:32 PM Marybe wrote:

  Lovetogarden,   I was on Abraxane/avastin...got the abraxane weekly and avastin every other time and then my normal monthly zometa.  The abraxane was very hard on me and I quit after 22 treatments, but I will tell you this....it works....took my tumor markers down a lot and also shrunk the tumors in my liver.  I lost my sense of taste altogether, but that came back within a month of stopping chemo.  I was able to work the entire time, but it was getting tough there at the end.  I got the dexamethasone in the IV with aloxi and something else as premed.  How long will you be on the Abraxane/avastin combo? 

Apr 18, 2010 12:51 AM heatherpalmerton wrote:

Marybe, You are a sweet relief of HOPE. You keep goin. I love this thread what a great idea. thank you Heather

Apr 19, 2010 05:25 PM GoldenEyes wrote:

I have a silly question..When I was first dx in 2002.. I was ER- and PR-  HER2 + Now I am stage IV.. mets to my Cervical Spine. I just finished Rads about month ago. IF I need treatment again...Which would I get? Chemo? Hormonal Therapy? When your cancer does spread. does it always stay the same? ER-PR-? Does it change to a Positive? Does that make a difference in your treatment?  I hope I am asking the question the right way.. Thanks for your patience

Donna

Apr 19, 2010 08:22 PM Marybe wrote:

   Golden Eyes, Yes, I have heard the stats of the ER, PR can change also, but if you are still neg, then would not benefit from hormonal treatment.  However, since you are HER2+, you could be treated with herceptin.  There are a lot of treatments out there and I am sure your onco will discuss them with you.  Are you on zometa or any of the biophosphonates ( am not sure if that is the correct spelling or even the right word?)  since you have bone mets?  Believe me not question is too silly to ask....it's the only way we learn.  I have been at this a long time and I still have questions and these boards can usually give me the answers. 

Apr 23, 2010 09:42 AM dyanx wrote:

Thanks for your words of encouragement for people like me with Stage IV and about to start treatment with Taxol and Herceptin.  I have been unsuccessfully treated with Femora, Tamoxifen and Falsodax injections.  So, I hope this next treatment will show some decrease in the tumors in my sternum, lungs and liver.  The weird part of this whole disease is that I feel wonderful.

 My initial diagnosis of breast cancer was in January 1997, my 14 lymph nodes were cleared and it had not spread.  I was on Tamoxifen for five years and then "discharged."  My oncologist said I didn't need to be seen again.  When I went for a second opinion at Dana Farber, the onc there told me that I never should have been discharged.  With my type of cancer I should have had yearly followups.  So, unfortunately, 12 years later it's back and spread all over the place.  I spend three years with crazy symptoms and after four doctors who diagnosed me with arthritis, bronchitis, put me on physical therapy for stiffness in the neck and arm (later I found it to be bone cancer) a rheumatologist had the foresight to do a scan of my sternum which disclosed my diagnosis.  So, what I want to emphasize is to encourage individuals in the early stages and told they were "cancer free" to be proactive and demand that doctors take their symptoms seriously and continue visits and testing.

I am 68 years old and last August started dating the man of my dreams so I would love to spend the next 12 or 17 years with him.  Thanks again for the encouragement.  We need to see more of this.

Apr 25, 2010 01:08 AM cwrightrn wrote:

I like the idea of just keeping your profile page bio updated.  That way, if someone finds something in common in your signature line, they can just click on your name and read your bio and PM if needed.  That's how I've come in contact with others with similar diagnosis.  Just a thought