This thread will be for the discussion of chemotherapy as it relates to Stage IV survivors
Thank you for starting both these new threads. It seems that alot of us are going the chemo route while many others hormones, I guess it depends on many factors including how various doctors feel about the issue. Making the decision on which was to go was very hard for me. Hopefully the seperate threads will enable other women trying to make the decision to sort through all of the various issues and different outcomes. I will probably pop back and forth between both threads in case I need to make changes in my treatment in the future.
Thank you for having this site. It has been a god-send to me.
Mets at dx were spine top to bottom, hip, pelvis, right femur which required IM rodding surgerynodes, lung and liver post surical blood clot behind right knee
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.
Just a reminder! it was Lowrider54 who worked so hard to get these new permanent threads posted.
"Topic: Recommendation for Stage IV Specific Treatment ThreadHello Moderators...I think after posting the above - perhaps the best solution would be to pin a thread at the top of the stage iv forum where hormonal, chemo and rads treatments could be discussed specifically as they relate to stage iv. The other forums are great but so many on the hormonal forum are early stagers who have an option to take the stuff or not - if we don't take it - we die.
Collectively, it seems most like all the stage iv stuff in one place so a new forum would not be desirable - I don't know if you can make sub forums under a main forum but the stage iv treatments, although the same drug, are given for very different reasons. It would be very nice to have one place for all the info.
Thanks for listening.
Low Rider "
Hope no offence is taken for this reminder but she worked for weeks to accomplish this task.The discussion is supposed to relate to stage IV treatment
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
My Mother was diagnosed with stage IIIC breast cancer in Dec 07. She had a Mastectomy and went through 6 rounds of chemo and radiation therapy. The past couple of months she has been coughing alot and she kept saying it was allergies, so I went with her to her next oncologist appt. they did a CT scan, a PET scan where they found hot spots along her Trachea and up near her collar bone in the lymp nodes. Her Pathology report shows that it is Metastatic from her Breast Cancer and estrogen/progest receptors are negative. We are meeting with her Oncologist today to find out the treatment options. We have been told they will not be using radiation again because it is too close to her heart and she has already had enough of that. Is there anyone out there who has a similar case. I do know that this puts her in stage IV because it is a distant metastasis. I just want to know if I have limited time with my mother now. Cancer is such a hard thing to watch someone you love so much go through and you are all my Hero's. I don't know what she wants to hear,what do I say to her to build he spirits? Thank you
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!
I myself have not long had recurrence,im am on Xeloda 14 days on an 7 days off,an also every three weeks Herceptini was not given chemo but think thats because i didnt handle taxol at all last time.
My cancer has reocured in my clavical area,i have four enlarged nodes there,im due another bone an body scan within a few months an really hope it hasnt gone any further as yet.
Id love to hear from any ladies who have had this spread an handled it an stayed alive for any amount of time,as im a mother of four very small kids,all under 10,an i know i wont be here when im 70,but id like to know it possible to stay alive an live with this so i could be there for my babies.
All my best wishes to you all ladies.
Love an light.
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.
You certainly do give me and all of us wonderful hope. May I ask who your oncologist is? I am from Cincinnati too. I feel like I have a good onco. but it sounds like yours is great! Also, I am not up on all the abbreviations - could you tell me what Als means?
Thank you so much.
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.
My chemotherapy lasted almost exactly one year. The year they predicted I would live. They gave me 9 to 12 months and instead I reached stability. Wooo hooo. Have been given an extra 3 yrs and although I moan and complain.... I am really thankful to have that time.
I started out with 6 sessions of FEC delivered week 1 with 2 weeks off to recover. However the second week I had to come in to clinic and get blood drawn. On the day of chemo I also got blood drawn and then would be told if chemo was a go or not. It was always a go.
When there was progression after FEC, we began taxotere weekly. Which was 3 weeks on taxotere and a week of rest. No clinic. By the end I thought I was mutating. Having lost my newly growing hair, my nails turned into talons and had the worst smell. I was dipping them in hydrogen peroxide for the smell, which also cleared up some of the infection. A dermatologist gave me some ear drops that cleared up the rest of the infection. Then the nails grew and the talons fell off.
I am a walking talking advocate for chemotherapy at the start. I have fallen off the boat of death and swum for shore.... its within sight.... but for now Im just bob bob bobbin along, snoozing on the lulling waves. I still hope I land on the beach named CURE but with each day that I cant get out of bed for more than 4 hours, I know I am losing my fight against the tide towards shore....
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.
I'm really glad to see this pinned. But I think I must have misunderstood what we hoped to do? I imagined having sub headings for the chemos we are on-so that anyone on carboplatin, for example (like me), could meet up with others on the same regimen, and quickly access all the information which has been posted. When threads in the past have been started they often sink out of sight, and then someone comes along, asking the same questions which were already answered days/weeks earlier.I've lost count of the number of new threads we have had in the past few months started on xeloda-the one chemo about which there are already pages of info a few months back!
It's nice to read everyone's history-but it's not really enabling discussion about the individual drugs we are either on, or are considering starting. Or have I completely misundersood why we wanted the threads pinned?!
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.
Elaine -- I thought the same thing too. Such as:
Would taxotere and abraxane fall under the Taxol category?...they told me it was the same family.
If I were to create a list I'd put them separate, even though they're all taxanes. I think they're all a bit different -- my onc told me once that even though I've done taxol I can still do taxotere since they're a bit different. In my example I just listed the first 3 that came to mind.
Abraxane/ Avastin, just started , am on 3rd treatment every 3 weeks. Get treatment on Wednesdays and Neulasta the following day. every 6 weeks Zometa is added to the mix.
First treatment, sent me into a spin. Went to work the following day, had Neulasta injection at 1:00 went back to work, got home while making dinner joint pain started to set in. Got so bad that I could not sleep, I took a pain med to get relief, that helped. Went to work Monday and only stayed 1/2 a day. Better Tuesday. Fingers and toes felt numb.
2nd treatment. Talked to oncologist, she prescribed dexamethasone 4mg 1 time a day for pain. The achy felling did set in on Thursday evening like before but not the pain. That helped a lot with the bone pain and slept good. Stayed home Monday from wok as I felt achy in the knees and feet.
3rd treatment, Last Wednesday. Talked to oncologist, she said her was dropping the dosage of the chemo and I could take 2 at a time of the dexamethasone. Made it through with no pain, but the sorness in the joints are setting in now 2 days later then usual.
Dry eyes I am using Re-Fresh Eye Drops and dry nose, a saline spray. Eating a high fiber breakfast and drinking lots of water as constipation is a side effect. Had trouble on treatment 2 with that, slacked off on the oatmeal and bran for breakfast. Taste was getting messed up so I was looking for something that tasted good and a little spicy and sour was giving me what I craved.
What lead to this treatment was Zoloda had stopped working and tumors were showing up in liver, and a uptake in bone. The tumor maker test rose and that sent me to CAT and bone scans. After the 2nd treatment the CAT and bone scan showed a decrease in the bone and almost hard to spot liver tumors, and Tumor Marker test is dropping 200+ down to 170.
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?
oops, sorry for repeating myself....guess I already posted most of this info.
Marybe, You are a sweet relief of HOPE. You keep goin. I love this thread what a great idea. thank you Heather
Marybe, Doctor did not give me a time frame yet, I think she is waiting to get my tumor markers down below 100, which seems to be her trigger point to react that a change is needed.
I have started a spread sheet journal on my computer of my side effects, how I am feeling and what I am doing to help myself, what meds & time taken, and recording my activity level. Getting hard to remember all at the office visit. I'll print it out to take with me next time as she likes to keep up with that, she knows I like to go to work and garden. She want's to help me continue doing what I love.
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
I think it might be helpful to have a change to the search abilities so we can find subjects easily. If they allowed a search of the post title only, it would narrow it down to the posts specifically about xeloda (for example) instead of returning every post where that was mentioned in the body....which can returns zillions of posts!! That might be easier that having so much pinned at the top. There are SO many posts on this forum on a daily basis, they just seem to zoom by and I can barely keep up! But searching for an older post can be challenging at times :>
Goldeneyes - I have read where pathology can change with a stage IV diagnosis so I might be worth asking if a biopsy of your mets is possible? I see you are er\pr negative, but if it did indeed change to er\pr+ then hormonals would probably be an option for you. This stuff is definitely confusing!!
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.
I noticed you said that your nose was dry, and you are on AVASTIn. I have horrible burning nose all of the time---were your symptoms like that, and if so, what did you take?
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.
I also would like to see some advanced search options and subdivison of this thread by different tx's if possible. I bumped up the xeloda thread a day or two ago for my own use- it disappears so quickly but has so much good info! The same questions pop up over and over.... we keep reinventing the wheel here, which is frustrating.
The review below lays out current and potential tx options in a nicely organized way; seems a good addition here, and is also relevent to the hormonal tx tread:
Recent advances in systemic therapy. When HER2 is not the target: advances in the treatment of HER2-negative metastatic breast cancer
I keep thinking it would be interesting if we could set up a collaborative open project, something along the lines of a google docs group spreadsheet where participants could enter data regarding, for example, type of tx, response, se's, etc... Don't know how it would work in practice, but the idea keeps running through my mind. Anyone else?
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