Chemotherapy for Stage IV
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I opted for Cheotherapy over the hormonal treatment as I had bad reactions to Arimidex, Zometa Femara and several other hormone based drugs it turned out that thanks to pars Chemo I am extremmely allergic to something that binds these pills together so I am on bone strengthening injections with other things bound into it I know it starts with S, but my chemo brain is not great and remembering stuff like that. I recentlly had Palliative Radiation therapy to try and help ease the pain in a couple of areas, I have friends that this has worked for but it has been some 4 weeks and my pain is not settling in the test sites unless the fact that they started chemo again only a short while after may have made the sites cranky I don't know. Oddly enough this lates cancer mess arosr early last year after I nearly died and I was having Abraxane then as I am now and I now need extra strong nausea aids that I didn't before, I don't know if it is because the cancer has really become much worse since then or that the comprimised lung(left lung + pleural effusion) is adding to the factors as it is now almost totally covered in BC now and I wheeze like crazy at night because though I sleep proped up there is still pressure there. I am dying but I have been still going this last 16 months defying doctors expectations. The chemtherapy has slowed some growth. I opted for it after the bad reactions as I would rather have quality of life for a shorter time then spend a long time being ill and I am at peace with it all and dealing with things as they come up it is a very individual decision but as my loved ones said they wanted me to do what felt right as it was my body that is the problem I wish you all luck and all the best in your journeys.
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Hi to all the chemo folk
I wasn't sure if you checked the other threads but it has just been posted that TexasKaren who was such a great support to so many of us on this thread, has died.
Rest in Peace Karen - you were a real star here.
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Oh no! It is very upsetting to hear about Karen. It is always tragic to read that another one has passed away, but even harder when it was someone you felt like you knew. She was a real inspiration to us all and will be missed.
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This is sad to hear! Karen was such an inspiration with an awesome attitude. We pm'd several times about a local Onc we both went to. I really can't understand this SH*T and why so many great women loose their life way too soon!
Rest in peace dear sweet sister.
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I am so sadden by this news. Thank you Alesta for informing us. I shall miss you Karen...May you rest in peace!
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My heart is broken that we lost Karen..another precious lady lost to this horrid disease! Thank you laurie for letting us know.
Love you gals stay strong please! Hugs kimber
Ps I got my scan results last week the abraxane didn't regress tumors but has kept left lung ones the same and two new small ones in the right lung..several new lymph nodes have popped up too. My hubby was sad but I think it was better than it could have been. Going to give it another month..then move on to a new treatment.0 -
Kimber - I 2nd what Glenna said....love ur 'tude as I did Karens and so many others in this boat. Keeping all of you in my prayers...always!!
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I didn't know Karen but I'm sorry for everybody's loss.
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Does everybody have nail problems with Abraxane? I have never had any nail problems in the past. I do the gel nails at home, do you think that will help or hurt?
So far, they look normal. I've had four tx so far. My hair is finally coming out and making a mess but I'm not sure about the nails.
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I haven't had abraxane yet but taxotere did a job on my nails. But the treatment put me into a relationship with NEd so i won't complain.. Now, if I could do something about these sleepless nights!!
I am enjoying a week in Newport, RI and ate way too much tonight ... All good, of course! hope all you chemo girls are having a good eek!0 -
My nails were a mess on Abraxane....started with discoloration, then turned a yellowish white before lifting and coming off. They also got infected and smelled. However, even though a lot of people have the SE with taxol family drugs, they told me mine was a severe reaction and most do not have it as bad as mine was. I have it now with the Adriamycin and am told that is not a normal SE with it so I think my nails just maybe be overly susceptible to this problem.
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I had the same issue with abraxane, discoloration, lifting, infection that smelled horrible. My nails didn't come off though. I cleaned them daily and used hydrogen peroxide to try to kill the infection. I usually don't have my nails painted because I chip it off, but I painted them all a buff color so I wouldn't notice how horrible they looked.
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Today will be my 22nd treatment of Adriamycin.....that was the number I was at when I quit the Abraxane. I am hoping I will be able to stay on this one until it quits working.
I went back and read a lot of TxKaren's posts....so sad....she always had encouraging words for others in spite of all she was dealing with herself.
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I agree Marybe - TxKaren always an inspiration. My nails lifted on Taxotere/Carboplatin, don't kno which caused it. I didn't lose them tho...all I did was keep them short and several coats of OPI's Nail Envy nail strengthener in regular ol clear formula. All the damage is just about all grown out.
Marybe - Keeping you in my prayers that the Adriamycin keeps working...you too are a major inspiration on this thread.
Hi Glenna - wish I could help you with your sleeplessness. I continue to take xanax and melatonin and when I can't sleep I will take an ambian or sometimes jes a half of unisom generic. Love and lots n lots of prayers to all!
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i'm new to this posting thing got a few ? anyone do taxol and xeloda. i was also diagnosed stage IV from beginning with brain met had 1 cyberknifed then 3 more showed up got that done about a month ago have been on taxol every other week since Nov. just started xeloda thought it would be done with the taxlol got called today and onc wants me to do 4-6 more weeks. i can't have a port till i'm off the antibiotics that i am on for 5 months from my port infection.so my veins have been harder to get
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After 4 treatments of TCH, breast tumor down from 4 x 6 cm to .2 x.4 cm. And liver spot down from 1.3 cm to .6mm.
I wish knowing this would help me to stop crying......
2 more rounds of TCH to go....side effects have really not been that bad----knock on wood... (as bad as you hear before cancer comes into your life). People at work and some friends think i am tied to a toilet bowl!!! The first week a little dizzy....kind of out of it, but the next two weeks easy breezy...(okay knocking on wood again).
A teacher at my daughters school this morning asked me how long the doctor gave me......i was going to ask her if she thought i was a carton of milk! Then i though against it because at this moment in my life i do not need any enemies....
Anyhooo, next week i meet with the surgeon, and probably talk about mastectomy vs lumpectomy.....aaagghhh
Any advice.....words of encouragement would be great! two oncs with two different opinions....please help!
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Kfontaine, I personally think the amount your tumors have shrunk in size is very impressive and who knows with two more treatments, you may just get to NED. Sometimes people say really stupid things without even realizing how they sound when they come out of their mouth. I am sure your daughter's teacher meant well. but Jeeze, what a thing to ask! That's like when I was having a consult with the ophthalmic surgeon who was going to correct my funky eyelashes (thanks to the one chemo I was on, they now grow inward and scratch my cornea) and he asked me How long do you think you are going to live? I honestly did not know how to answer the man, told him I had no idea and no one had ever asked me that before. He was trying to decide if it would be worth my while to have the surgery done, but there again, what a thing to ask!
How about a 3rd opinion as a tie breaker for the mast vs lump decision? And I am serious when I say I think the results the chemo achieved for you so far are a dramatic change and very positive.
Braids, I never did taxol so can't say anything about it. I did do Xeloda and did not have any real SEs with it....not even the hand foot syndrome that often comes with it.....unfortunately it did not work for me. There is a Xeloda thread and lots of women on there are having good results with it.
Thank you for the prayers Memasue.....they do work.
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hi all,
Sorry I haven't been on much this week. Have been so busy vacationing and playing the tourist that I amiable to sleep at night. Have been doing lots of walking and all tHat exercise makes it easier to sleep. Memasue, thanks for the advice. I do take clonazepam but it doesn't always help. I'll mention xanax to my onc. Kfontaine, your results sound very good to me. I favor the mastectomy, personally, but I always want to be as aggressive as possible. It's not an easy choice and it has to be yours. Braids, xeloda didn't work for me but taxotere did kick some butt. Hope the taxol xeloda combination does the trick for you and hope you're able to get your port SOON! Marybe, still so happy about your good results with the red devil. We all strive to emulate you!! @ kimber, hope you're doing okay. Prayers to all.0 -
Braids,
I have been on Xeloda and Taxol but not at the same time. Xeloda has been the easiest chemo for me and it worked for me. Taxol was similar to my experience with Adriamycin and Cytoxin. I had fatigue, loss of hair, and nails on my fingers were lifting.
I have had chemo off and on for the last 15 years. I had a port when I did a stem cell transplant in 1998 but have not used a port since. I know alot of people love their ports but my experience was not good so I do a couple of things to help my veins. Sorry if you already know all this but just in case.
1. Hydrate - I drink 17 ounces of water as soon as I get up. I work on another 17 ounces while I am getting dressed and I finish the third 17 ounces on my way to the doctor's office. I get early morning treatments so I try to get as much water as I can handle.
2. Be as warm as I can be. I wear more clothes so that I am almost hot. As soon as I get in the chemo room I ask for a hot pack until they are ready to do the stick.
3. Use a squishy ball to exercise your hands by squeezing the ball while you are watching TV. Supposedly it helps the veins. If it doesn't, no harm done.
My veins are small and they "roll". The best ones are unusable because of the scar tissue. I am lucky that I can use both arms since I was Stage lV out the gate and my surgical oncologist said there was no reason to mess with lymph nodes since we already knew it had traveled. I make a note of the arm we used each week so I can keep it rotating.
I hope some of this helps someone,
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I hope that teacher meant how long you have to be on chemo, not how long you have to live. Because, that is one rude question and a teacher, of all people, should know better.
Robyn I am impressed you were able to do chemo for so long with no port. I definitely do not like my port and I didn't want one. One treatment of Navelbine changed my mind though, that stuff burned my arm for a week. But, I have been tempted to take it out now that I'm on Abraxane. I think having only one arm makes that not a smart idea though, and I lost a vein at my last surgery - they clotted it up and it hasn't healed and it's been six months. Those are good tips though, I'll keep them in mind. Even though I have a powerport, nobody will use it so I still get stuck.
This Abraxane is weird. I have been losing my hair evenly all over. So, it is very thin but still looks like I have hair. My normal hair is very thick and unruly and now my stylist says I have normal hair, lol. To me, it feels like there is nothing there. I am wearing scarves but sort of as headbands, wide across the top and tied at the bottom with bangs showing. It looks more like a style than anything else.
If I run my hands through it I still get a handful of 20 hairs and it's messy but not coming out in big chunks like the last time. It's so odd. I suppose I will end up bald one of these days but it's taking its sweet time.
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CoolBreeze,
My body actually pushed the port out of my body. This was in 98 and it was a Groshong port which made me feel like some sort of borg.
The oncology nurses usually say something about a port twice a year. And you are right, Navelbine is a real beast on the veins but I am hanging on for as long as I can. They said I would need a port and I asked if I could just try without. It is working out so far.
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Well, I hope my body pushes mine out. I don't think I'll take it out but if something happens and it has to come out, I am not going to immediately replace it.
I have mine in my arm, which is its only saving grace. It is ugly and painful there too but I think would be more so in the chest.
I know it's convenient for the nurses and that's why some people seem to think a port is mandatory. But, I did a full year of weekly infusions without it and would do it again in a heartbeat.
Other people love their port and good for them! I never minded getting stuck so that part doesn't help me and I find having a port a lot more uncomfortable than a weekly needle stick.
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CoolBreeze,
We think alike. I don't mind getting stuck even if it hurts I keep it to myself. I don't want to give anyone the chance to suggest a port.
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I have had the same port since 1999....didn't get it right away as I just did not want one....to me it was physical evidence that I had cancer....not that I didn't know I had it, but just didn't want something visible if that makes any sense. I always had very difficult veins, hard to hit and then when they did they would usually roll and since only the one arm could be used due to the mastectomy, it did not take long for my veins to give out. Every once in awhile I will get someone who wants to try or I will be somewhere getting a test where they don't have anyone who can access a port and they will give the veins a try, but it usually ends up a disaster. It's not even that it really hurts, but after three or so tries I feel like screaming or crying. So in my case a port has been good for me and it doesn't really bother me at all and is just like a part of me now. It doesn't bother me, has been stuck so many times I always say no to the cold spray and it's just there. But I can understand why some of you do not want one. In my case since I am going to be doing chemo the rest of my life, I am comfortable having one.
Maybe you won't lose all of your hair, Coolbreeze. I would think that if you were going to, you would have lost it by now. I have stopped losing hair with the Adriamycin, but don't have much left...had my friend trim it all up so it is even today since I run around without any head covering most of the time and it looks better not to have wispy stuff flying around.
We ate at an Indian restaurant tonight and I was hydrating for sure.....must have had at least 8 refills on water because the food was hot......only had 2s and 3s, but I just cannot tolerate the hot spicy things the way I used to.
Glad you had a good vacation, Glenna.
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I need some help please. My friend has Signet Ring Cell - breast cancer. Can anyone out there tell me if there is a vaccination study?
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Personally i hate the port...and like you Marybe...never wanted one mostly because of it being a visual cancer reminder I'd have to see all week! I have great veins and faired well for 2.5 years with them, but now on navelbine my onc insisted i had to have a port...she wasnt even sure if the infusion nurses would even give me navelbine infusions without it. I certainly made it clear how bad i didnt want it.
Cool breeze, i actually asked her if she could put it in my arm instead, thinking id feel better about that option. She said no and that that's not a port but a pic line in the arm. Apparently you do have one in the arm and also if i recall correctly, you had it put in due to navelbine.0 -
Kfontaine and Marybe...
Just went to my atty to re-do my will...I was not in the best of spirits to begin with and he asked how long i think I have to live....I was a little dumbfounded and didn't know what to say so just told him it all seems surreal to me and I still feel well....and i don't know. I wished I had said something else...like..."How long do you think you have to live?"0 -
I completely understand the visual Marybe. That is why I had it put in my arm. Yes, I can still see it but it stops a lot of the questions I would get if it was in my chest. I am very thin, and it sticks out about an inch from my arm - and would do the same from my chest. I like wearinng open shirts so it would have been hard to hide.
I don't have a picc, I have a port. It is not common to put one there and people have "corrected" me too when I tell them I have a port in my arm. "No, you don't have a port, you have a picc." "No, I know it's in my arm, but it's a port!" "It can't be." "It is, and look."
I do get attention from nurses, who have to crowd around and see the lady with the port in her arm. The radiologist who put it in said he had done many in the arm back east where he was from. The reason they aren't common is there is a slightly higher chance of clotting since the tubing has farther to go. But, it was worth the risk for me. In short sleeves and low cut shirts you can't see it. The downside is that everybody is afraid of the port in the arm. Even at UCSF nobody would use it, even though I showed them the card that said it was a PowerPort. And, when I had my surgery they put a Picc in my neck rather than use it! I couldn't believe that one.
My chemo nurses know what to do though.
It's interesting and hopeful that I might not lose all my hair. It is certainly still falling out but it is taking a long time to get there. I have read that some people have had slow hair loss on Abraxane but ended up bald. I don't want to get my hopes too high for keeping it but wouldn't that be nice?
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Millermartin,
You might want to start your own thread with signet ring cell BC in the title. I never heard of it but your question is likely to get lost in this thread and you obviously need some answers. Starting a new thread will pop out at people and I'm sure you'll get some responses.
Best of luck, Glenna0
