Chemotherapy for Stage IV
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MemaSue: Always good to get 2nd opinion.... especially facing major decisions such as surgeries, etc.!
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Well ladies I guess I am officially stage 4 now. My TNBC has aggressivly gone into my skin and is spreading like a train. I've done A/C, Taxol, Surgery(14 out of 20 lymps positive), Carbo/Gem(Finished last Jan 2011)clean pet, Rads finished May2011, clean pet, Port removed I think it was the end of June or first of July, felt a small lump around the middle of July on a Wed. than a cluster of more 2 days later and then bam spreading like wildfire. Tumors in my clavicals secondary mammary etc. They tried Xeloda for a week still kept spreading, started Abraxane last tuesday and get my prot reinstalled this tuesday and once I heal from that I will start Avastin too. My markers went from 88 2 weeks ago to 199.2 last Tuesday.Edema in my left arm and belly. Pain is crazy I'm taking Oxy evry 4 hrs. I'm praying there is still hope. I'm just not ready to go yet LOL like we ever really are. It's hard to believe that I felt fabulous in June and really thought that this FC was behind me.
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Welcome laurajane (not that you want to be here). I hope you have mild SEs from Abraxane like I did (low platelets the worst) and it kicks some butt.
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Dear Laura. I hope you have good luck w Abraxane. I had regression on it and wish I could go back on it. W avastin, you will have the big guns. We will all be hoping that you have good news in a few weeks, the kind we have heard many times in here.
Of course you're not ready to go! You haven't begun to tap into the arsenal yet.
Are you wi a good center? Do you have something to help you sleep? No good comes of night worries for me anyway.
Best to you and family. Please keep talking here. Kathy0 -
Wow! Thanks K-lo and reesie. I don't think I will mind the Se's if they work and give me a little more time. Thank-you for your kind words.
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laura, As most people on this message board know I am quite a wordy person and am all over the place commenting on threads, but sometimes what I want to say does not come out right so I just don't comment at all. I honestly do not know what to say this time, but I will take a stab at it. Of course you aren't ready to go and I really think it is too early to even be thinking about that, But we do, we all do, when we get bad news and find out things are progressing is spite of treatment. Chemo worked for you before and you had clean PET scans so there is no reason to believe chemo will not work for you again. I did abraxane with avastin and for me it was the treatment that was the hardest on me, had the most SE's, but the fact is it worked....IT WORKED! It took my CA 27/29 way down and the tumors in my liver shrunk a lot, but I quit after 22 treatments. To this day I still question myself on that decision since all of the treatments we have done since have failed. However, I am still feeling fine and working and living a "normal" life in spite of the fact that my liver tumors have multiplied and grown in size and my CA 27/29 has really reached astronomical figures....3,307! Pretty scary, but I am still not thinking this is the end and am going to keep on trying different treatments until we find one that works or we have exhausted them all. And who knows I may be doing abraxane again, along with you. If the oxy isn't working, maybe they need to give you something else for pain. I pray that abraxane works for you . There is always hope....hope is what keeps us going so don't give that up.
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laurajane: Do not despair! My cancer came back in Dec. with a vengeance too... spreading all through my bones, and I have clavicular nodes/skin gland mets too (see picture, if I can post it...) Spreading continually. I failed on Navelbine, Gemzar and Xeloda. I'm now on Avastin and Abraxane, and the nodes are going down and the skin mets are 'drying up' (like a bad case of acne), but slowly... but at least that's something! I'm praying the bone mets are being controlled too internally where I can't see. My onc is thinking about external beam radiation on the skin mets down the road, even though this is the side that I already had radiation on in 2007. They are very superficial, not deep, but a pain and ugly! This picture is from April; they are lightening and 'drying up' a little now. Will see what another round of chemo does (on my third now).
The pain is constant, but I'm managing on 1/2 hydrocodone every 4 hours on bad days; 6 hours on good days. I'm still working full time, with some fuzzy-headed hydrocodone brain...LOL I am retiring in December.
There are many other regimens still out there for you too...... But I am betting you see some benefit from the Avastin and Abraxane. I have not had too many S/E's (unlike poor Marybe!)... mostly just a lot of all over body pain (like someone beat the heck out of me) on day 4-5, but I picture it as the chemo killing all those cancer cells and on those days they are dying horrible, wretched deaths !!
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Karen, So that is what skin mets look like.... I am sure they would know if it was shingles, but it sure does look like them. Oh by the way, I highly recommend getting that vaccine to any of you if your onco says it is OK. My SEs with Abraxane were not the normal run of the mill ones.....the onco at MDA said I exhibited extreme toxicity to it.
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I would say my skin mets kinda look like that too. Only not as many and not as pronounced. Like very hard pimples.
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Yea... that's what they're like on my boob ... but I didn't show you that...LOL! This is the upper part. The "pimples" on my breast and under it are what are drying up and going away... I pray that it spreads upwards too and gets these beasties!
Someone in another board asked, is that the same type of cancer? Yes, I had it biopsied when it came back. It is the same type of cancer that I had in 2007; it has just chosen to go to my bones, my clavicular lymph nodes, and these skin glands. Funny Marybe... when the chemo is working on it, it does itch and prickle like shingles !!! That's how I know the chemo is working on it !
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Hi Ladies, OhTK that sucks I never have seen skin mets either, thank for showing us. I hope you can get relief soon. I was admitted to ER last week, I couldn't breath my 02 levels were dropping to 75% I was blacking out and talking jibberish falling asleep. So i get admitted and they find fluid in lungs this is 2nd time in month. They starve me to 1.5 days do procedure to remove h20 which I keep jerking during because I am sleeping and having drug withdrawals. The nurses knew when admitted the meds I have been on I gave them a printout from my Onc. Yet they gave me 0. I try pleading with them and they say a dr needs to ok this. Well after my procedure I start barfing nothing in stomach so after 2hours its green bile. My brother was there at the time and he was pissed. They never once came in my room to give me a barf bucket or ask how I was doing. My local Oncol shows up and he took one look at me and said I am having drug withdrawals. He get me an injection of morphine and I immediately feel better. Has anyone been on Ixempra a new chemo?
I started about 8 weeks ago but sdx are bad. I keep being turned down to get it because platelets too low; Yes, I have had quite a bit of rads to spine. I also needed a blood transfusion for hemoglobin. Yikes never had that before But get this my cancer center which is 2hrs away is trying to get me to go there to get chemo despite me just getting out of hospital, being on 02 and feeling like I was going to die in there. My platelets were probably too low anyway. I sometimes wonder if they really care or just want to fill seats and make money. Can anyone relate to this
Stay strong enjoy every day ladies.0 -
Mohonda...omg sounds like your hospital experience was a nightmare! I don't know lxempra but I can tell you the transfusion is nothing compare to all the other stuff we go through. It just takes most of the day, is all. And you begin to feel so much better almost instantly.
Stay strong to all the sisters in this fight.
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I don't think Ixempra is that new.....my onco wanted to do it this time, but I had heard SEs were bad, however just this past weekend I had lunch with some ladies from this area and one had been on it and did fine. There is a thread about it. I think it's the same as with any chemo, some hit one person hard and don't really cause many SEs at all with another. I hope your onco raised H...with the hospital for treating you the way they did. What ever happened to CAREgivers? I have thought for a long time that is it now all about the money....things have changed drastically at my onco's office and I don't like it and neither do most of the patients or the staff....everytime I go in someone has quit. I hate to say it, but I do not think things are going to get any better with the heathcare changes.
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No, ladies, the coming changes in healthcare (well unless they repeal and replace a lot of the hastily crafted bill) will make things a LOT worse. For everyone, not just cancer patients. There will be an additional 4.5 million people added into the healthcare system and there are no new doctors to see them. I work in healthcare society management, and everyone is very depressed. Plus they are cutting medicaid/medicare fees again for doctors by 29% next Jan. Doctors will stop seeing these patients; they are only making $.39 on the dollar now compared to regular insurance.
Mohonda! What a nightmare!! Is there no other place you can go? Be a patient advocate and write the hospital administrators and the Director of Nursing a letter. Don't be ugly or mean, just state the facts and what was done and not done for you and how it affected you. Believe me, you will get a response. Yes, there is definitely a withdrawal effect on morphine... ask street addicts! They should have known better.
Imempra is one of my 'next to do's" also...
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Hi all of you wonderful ladies.
Marybe- is your ca the same as markers? I am anxious o see what my markers are this Tuesday.
Karen- Mine looks very similiar but its also very contorted looking where my breast used to be.
I went to get my port installed last TUesday but they couldn't do it because of a staph infection the good news is that my onc saw me and I showed her some new tumors that had developed over the last week and the continued spread of the skin mets and she gave me Avastin that same day through IV she said she didn't want to wait on the port. So happy at how things worked out. I wasn't supposed to see her until the 20th after my port had healed so i would of had to wait another 3 weeks. Also glad the staph was discovered before surgery the Surgeon said that could have been very dangerous. Ahhh somethings work out really good.
Mohanda- how scary. I can't even imagine your hospital allowed that to happen. I hope you follow up on that. Hope you are feeling better.
I hope everyone is having a nice week-end.
Thanks again for the encouragement.
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Laurajane: Your angels were watching over you for sure!! So good you got on the Avastin fast. I can't believe what it has done for mine... and I am SO THANKFUL that insurance is still covering it !! Enjoy the weekend!
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Laura, The tumor markers are the CA 27/29 test...I forget what normal is....anything under 30 perhaps? All I know is that mine are 3,306 at last count and we have not done then since I started Xeloda and Herceptin. When I was there this past week for my second dose of herceptin, I told the PA I saw I do not want them testing me again until after I get back from vacation....I would be celebrating if it was lower, but if it has gone up even more it would ruin my trip and I don't want to take the chance.The lowest mine have been since we started doing the test was 18....they were in the 100s when it was discovered that my cancer had recurred.
There is another test called a cell search which is a circulating cancer cell search....that has always been zero for me and I don't think they really worry about that if it is below 5.....My ins has decided it is no longer a valid test so they would not pay for it last time. I had gotten it for years and then all of a sudden they decide it isn't valid.
I went for a 2nd opinion last week and the onco I saw was mentioning all sorts of treatments so I guess I am not at the end of the line YET!! But lst step is finding out if the Xeloda is working.
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I've never had tumor markers done; never even asked about them. I think he does test for circulating cancer cells from time to time (at least he did before my recurrence). We've been able to tell if there is progression or not by the angiogenesis on my arm/chest and the skin mets. When chemo is working, they go away/receed. When it stops, back they come. I agree with you Mary; wouldn't want to know until after vacation. It's strange stuff.... we feel like the current chemo is working, but we don't ever know until we get the scans at 3-4 months. But, we have to live every day believing, or we would not keep up the fight! I'm glad you got a second opinion and found out there is still lots out there for you! My trip to Dallas was reassuring to me also.
Wishing you a wonderful vacation, Mary!!
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Hi, wondering if anyone could answer this question, I am doing gemzar.herceptin for stage IV breast cancer. With every infusion they give me decadron which is responsible for most of my side effects, does anyone know if I have to have the decadron. This treatment is working for me, I have had 5 infusions and there is a lot of shrinkage to the tumor. thanks for any information.
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I have sensitivity to decadron too, so Onc decreased the dosage.... ask your onc if he can cut it down to lessen the side effects.
I don't really know why some chemos get the steroids and some don't. Don't know why some get benedryl and some don't. I think we all get the Zofran or similar for anti-nausea. I know some are very apt to cause reactions if you don't, but don't know if there is a 'system' to this or not.
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Thanks Karen, I got benadry my first time around six years ago but it put me to sleep so I asked if I could stop and onc. said yes. I was just trying to see if anyone had done this without the steroids.
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My onc stopped the decadron when I told him I was fighting depression something fierce during the first rounds of chemo. The only difference I had was the depression was gone. Hated that decadron for a long time. Hope to never be on it again. So talk to your onc and see if you can have it decreased or stopped.
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Hi Ya'll...
I posted on the Chemotherapy thread and it feels a little funny being there - I started chemo on Friday - Abraxane and Avastin. I know it was me who helped get these topics pinned to the stage iv thread when I first joined and you guys were talking about how different it is (even though we couldn't get it to break down in specific chemos) but I went ahead and posted on the regular chemo thread anyway. Duh...as a stage iv, we don't count the rounds like most of the folks on the chemo topic...we are on it for as long as we can tolerate it.
Well, now that its chemo, in one form or another for the rest of our lives - I thought I understood the difference (I did, sort of), the reality of now its me and no longer based on my research - I am living it. Kinda nice, though, to have this place to go...I hope this makes sense to somebody - it happened so fast, my head is spinning (not from nausea, thank goodness...LOL)
Today...after 5 days post treatment, I am pondering when I will start to feel a little better. Do I have to wait until it knocks back the new progression? Is there a time frame post treatment when I stop feeling so crappy? This will really suck if it only gets worse with each treatment (I know my blood counts and stuff will drop) and there is no end in sight - help! I worked all through my chemo back in 1999-2000 - boy, I sure couldn't imagine trying to work in this condition - I have enough trouble getting anything done around the house - this has turned into some retirement - one road trip when the 'back attack' that brought on this new 'bump' in the roller coaster ride though it feels more like a sink hole but I do have totally beautiful weed-free gardens for the first time since I could work on them daily instead of just weekends.
Any and all ideas, suggestions, thoughts, theories are welcome!
Thanks
LowRider
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Lowrider, I am so sorry the SEs are hitting you already with this one. I did abraxane weekly for 22 weeks and had the avastin every other week. I did not really have bad SEs until I had been doing it maybe three months....had the funky nails which progressively got worse and the hair loss started after about three weeks. lst SE for me was taste buds.....lost my salt sensitivity lst and kept adding and adding it to things before I realized it was my taster that was off. The tearing eyes got bad after about 3 months also.....have those checked right away as you do not want to allow the ducts to become totally blocked as mine did. I finally quit when the neuropathy started in my hands.....I could tolerate it in my feet, but need my hands too much. For me this was the worst treatment I was on, BUT it was also the only one that really has worked for me in over two years. The ones I don't have SEs with, don't seem too work. My onco says there is no correlation with SEs and the effectiveness of treatment, but after having 4 chemos and two hormonals fail, all having very few SEs other than messing with my bowels, I think differently that he does. I certainly hope this combo gets good results for you. Maybe they just need to adjust your premeds. On the abraxane, if I got it on Wed. I was fine because of the decadron until Friday afternoon and then I would pretty much sleep for a day. Avastin had me a constantly stopped up head along with nose bleeds. Looking back, I wonder if I should have stuck it out.
What you say makes perfect sense. We are "lifers".
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Lowrider: I am on week 3 of third cycle of Avastin/Abraxane, and I have a lot of the S/E's that Marybe had. I've noticed that these cycles are kind of cumulative, in a way, and that each week they make you feel a little bit worse. That's why they give you one week off, to recouperate. I've gotten myself into a 'schedule' though, and I know my good and bad days, and know when to work hard and when I'll be feeling like a couch potato. I get chemo on Weds, and again like Marybe, the steroids carry me over until Friday when in the afternoon for about 24 hours I feel like 14 Sumo Wrestlers have beaten me up....LOL Just all over body pain and flu feeling; thank God for hydrocodone. I've managed to get the severe constipation under control now (Mirilax and Benefiber!) and I've got the 'booger nose" too. The food tasting funny is with me almost all the time; can't taste salt or most spices (even mustard!); made Taco salad the other night and mostly tasted like cardboard salad...LOL I just put it in my mouth, chew and swallow and try not to think about it. I've maintained my weight, but it would be very easy to drop another 10 pounds, but I can't do that. Nutrition is key to our fight! Some neuropathy in my fingertips, but not bad, I'm still typing !! My counts have stayed stable.
Again, after a cycle or two, you'll get into a 'routine' as you go through these, and find that except for a couple of days a week, you are able to maintain a fairly normal life style. I'm still working full time (or, what is considered full time, but I'm not nearly as efficient as I was a year ago!)
As far as how long you have to do it? Depends on you and your beast. Some are lucky and get a really good response and can go off of treatment for a few months; some, like me, have a really aggressive beast, and if this one quits working (praying I can do this for several months!!) I'll switch right away to another. This is my fourth chemo since December; Gemzar and Xeloda didn't work at all, and Navelbine only worked for 2 1/2 months.
I really feel like I can do this for as long as it takes; even if I have to do another regimen that is harder (more S/Es). This is my new "Job"; my mission.... being a warrior woman and fighting the fight. God is standing right beside me through this, and, heck, if he can walk with me through me, I certainly can do it !!!
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No chemo today !!! Doc said I needed to "rest my marrow".... so I came home and took a nap. I'm good at following doctor's orders.
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Thanks Marybe and Karen
I don't get premeds because of the condition I am in - retaining fluid, pleura effusion, incontinence and low hemoglobin - no steriods and I get the 'boost your immune system' shot. I have treatment every 3 weeks - both the Abraxane and the Avastin. I get the shot for the hemoglobin each treatment but I get the Xgeva every 6 weeks (every other treatment) to address the bone strengthening.
I will be going for blood tests every Friday to keep a check on the hemoglobin - it had dropped from 10.4 in June to 7.9 on treatment day. Due to the downward spiral I was on in a matter of only 4 weeks and 8 days in the hospital - with all the tests, they were pretty certain there was no bleed and perhaps the fact that I was so ill prior to the treatment, it has effected me differently. This may be a case that the new progression needs to be knocked back before I will feel better. There was a question about the fluid - would the first treatment get any drainage going? It was very uncertain and a 'split decision' from the staff (we even polled the scheduler) as to when the fluid would cut loose. My legs were like tree trunks from ankle to butt, my arms looked like I could have been in a fat suit, my face was a puffy round ball, and my tummy - well, I really did look 8 1/2 months pregnant! Then the lung fluid.
Anyway, it is hard to tell what is really se's, what is a result of the total change in all of my pain medication, what is due to the rapid change downward in my condition from stable to a major mess, or the chemo.
The up side is that the fluid DID start to move - me legs are almost normal but they hurt a lot, my face is not nearly as puffy and my arms have lost their 'fat suit' - the tummy has reduced to about 7 months pregnant. I am adjusting the pain meds a bit as we were still in the process of finding the right combo - the meds are correct, it is dosages and timing and I am making progress.
I do miss that steroid bump up but it would not be a good thing with all the fluid. With the CMF, it was chemo every week, all drugs the first, 2 the second, 1 the third, and then just blood work on the 4th week. I was younger, stronger and not nearly as 'sick'.
Thanks for the eating heads up - I am really struggling to eat as nothing really appeals to me and after 3-4 bites, the pressure on my tummy is killer. I eat very slowly and chew a lot. A friend is taking me shopping tomorrow and I have gone over the Eating Hints they handed out with my chemo class - I cannot stand long enough to cook so it is microwave meals, jello, fruit cups, anything that can be quickly opened and eaten and contains moisture as the dry mouth is horrid - so I am trying to eat as healthy as I can - and I do add the Ensure for the immune system since that is what we are trying to give a boost to in the first part of this adventure. I will have scans after the second round on Sept 23rd and before the 3rd one which isn't scheduled yet as it depends on the results of the scan.
Everything is so uncertain, I am just kinda going through the motions - I have cut my ponytail off and it will go to locks of love because I will lose my hair this time - no question about that. I kinda like the kicky doo - I generally cut and style my own hair and it isn't too bad but the back needs just a tad of professional touch up - my fingers are already getting numb and it is so hard to hold my arm over my head - even in the shower. Shorter hair is really easy compared to the long stuff.
Karen...sorry you couldn't treat but also glad you DO listen to Dr.s orders...LOL.
I really appreciate the honesty and candid 'what can happen' that you guys offered up as part of your personal journey with this beast. I don't know if this is agressive or not. I keep being told that what has happened should not be happening but it is and I just want to treat it and move forward and try to feel good again.
Hugs to you both!
Sharon (aka LowRider)
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Hi Marybe- I am encouraged by your comment of friends doing fine on Ixempra. I dont know anyone else who has been on it. I have been on Abraxane since April and it has stabilized my lymph node, bone and lung mets which all progressed with my prior 5 chemos. But my PET last week revealed mets to my liver so my onc wants me to start Ixempra. Does anyone else have experience with Ixempra? Im nervous about discontinuing the Abraxane since it has stabilized my other mets but my onc says the liver mets trump the progress to my bones and lungs. Thanks to all of you for the information and positive wishes you share. While I dont post often, I do read the stage IV postings and find them helpful and encouraging.
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Lowrider: Supplement with Boost and Muscle Milk shakes too.. more protein than Ensure.
MaryCT: So sorry about the liver mets !!! But, the good news may be if the ixempra works on the liver mets, you can go back on Ab/Av after you get the liver mets in hand since you are doing good and it's not that it quit working; you just needed something else in the middle.
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Thanks, Karen. That's a good way to look at it. I am going to Sloan Kettering on Monday to get a 2nd opinion to see if they agree that Ixempra is the best next step. Best wishes to you and all of us in this battle!
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