Chemotherapy for Stage IV
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Dear Fionaz,
I know what you mean by feeling "alone". I have dear friends and in-laws who care about me. But I am the only one with this malady in my circle. I have tried going to breast cancer support groups but am the only one there in stage 4 with no hair, etc. I think it's okay to wallow here, at least in the fact that we have a special outlook on life. No matter how positive you want to be about it, we've been given a big wake up call about our life expectancies.
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im undergoing treatment for my stage IV which gone to parts of my pelvis...thanks God, my SGPT went down to normal level. Im taking Bondronat thru IV before but began with tablets since Feb taken every other day fro 3 mos. this is alongside Xeloda which I take 2 tabs in the morning and 2 tabs in the afternoon after meals fro 14 days then 7 days rest then another 14-day cycle. Bondronat oral chemo has had strong side effects on my appetite...have grown weaker and get tired after few steps (5-10). Afraid this might be due to mild water in my lungs or heart. will have to go back to manila this weekend for diagnosis...God bless me
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I hope you can keep doing things that you enjoy. Best wishes.
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Hope they get the problem under control, Sally. Sending prayers your way.
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I just had Navelbine #6 yesterday; my hemoglobin really dropped this time; not low enough to need a transfusion, but low enough to increase my fatigue. They also checked my iron and B12 but I don't have those results back yet.
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Hope you get past the fatigue soon and your iron and B12 results are good.
Love n hugs. Chrissyb
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Hi Vinny,
I managed very well on Xeloda and Herceptin. I was also on Zomeda for bone building/pain. I just recently had progression (a new tumor in a lymph node lateral to right ovary) so quit the Xeloda, but I was stable on that drug regimen for 2 years, 9 months. I knew a woman who was stable on Xeloda for 7 years. The only problem I had with it was the hand/foot syndrome. I managed that with Bag Balm on the hands and feet every night & slept in socks & cotton gloves. I started out 2 weeks on, 1 week off, but toxicity led me to 1 week on, 1 week off. I took 2 peach colored tablets in the morning and 2 in the evening for my "on week". When I started, I took more. I think they always start you on the most you can tolerate and then back off. Please feel free to PM me if you have any questions. Best of luck to you. I know it's tough when the kids are young! Ann
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Hi Ladies,
My name is Jenifer, I was diagnosed last February 21, 2011, I am 32 years old. I have a very cute 9 months old baby, her name is Sofia and a very supportive husband. I was on stage 4 and mets on liver and bones. I am going to start my chemo this Thursday. NOt sure if my Onco decision is the best for my situation. She said I will be on FEC for 6 rounds. I haven't seen or read anyone on FEC for treating stage 4. I hope I am going to get through this without having a hard time. I have no family here in Canada, as I just came here 2 years ago.
Diagnosis: 02/21/2011, IDC, 0.93cm, Stage 4, Grade 1, No Nodes, ER+/PR+, HER2-
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Still low on hemoglobin, but it did go up a little bit this time, not down!
Good news is that my iron and B12 were both normal.
Had Navelbine and Aredia yesterday, next week is my week off!
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Jenifer:
Where are you located in Canada? If you belong to a church or daycare social group for your sweet Sofia perhaps you can find friends there. Also might help to talk to the social worker at your cancer clinic - you'll find they are wonderful at finding resources for you. Stay in touch with us here and let us know how you're doing.
Sandy
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What exactly is FEC? is the C Cytoxin or Carboplatin? F, Faslodex or Femara?.....I have been doing this quite awhile, but still don't know all the drug combos and suppose that is a good thing since it means there are many out there I can still do. I saw my onco yesterday and he said we are not going to do scans until next month, normally is it every three which would be now, but he says he wants me to have 4 cycles of gemzar and I said, but I have had more than 4 and he informed me with this one, two treatments count as one cycle. Yesterday I got my Xgeva shot also so we shall see if I get that achey feeling tomorrow or not....last time is didn't happen so I am hoping my body has adjusted and that constipation is my only SE. He ordered a CA27/29 yesterday so am hoping that is going down finally...was 1617 last time.
Momcat, Are you constipated with navelbine?...that is when it all started for me, but I find 4 senna in the PM keeps me regular. I never wanted to be like my grandmother, obsessed with bowel movements, but looks like I am there. How are you doing Sally? I hope everyone has a good day. Marybe
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hi sandy, i am here in calgary, my husband has to take some off from work since I was diagnosed and he's taking care of my Sofia. How are you today? I hope you are having a good day :-)
@ Marybe, hi there, FEC stands for FLUOROURACIL, EPIRUBIN and CYCLOLPHOSPHAMIDE. I noticed most of us Canadian Girls are getting this type of CHEMO treatment. I will let you know if this works ....i am looking forward for my chemo treatment on tuesday. I hope this time my body will cooperate
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Marybe, yes, I do get constipated with the Navelbine. I take Miralazx or milk of magnesia for it. I have gastroparesis and I cannot take senna because of that.
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I think the constipation with the navelbine just carried on over with the gemzar....sometimes the laxative/stool softners work, sometimes they don't. I always thought when my grandmother and then later my Dad would always bring up this subject as soon as I would see them, "Well, no BM today or My bowels just don't seem to want to move", For Pete's sake, Do you have to share this with me? I really don't care. It's no big deal so why talk about it? But now the shoe is on the other foot and it is me and it IS a big deal. I have turned into my father and my grandmother!!! But when I look at the big pic, I guess it is really no big deal....The important thing is for the treatment to work, which I am still doubtful about given my tumor markers, but I will find out when we do scans.
Sweetangel, Good luck with your treatment on Tues....I don't know if all the chemos work the same way, but I always found it would take about two days for the SEs to hit me and then I would go to bed, but they would pass and then I would get back to normal. It's funny how our perspective changed....I always said I would never ever do chemo, but when I found out the cancer had spread, I said Bring it on. And regardless of SEs, I figure if the treatment is working, it is worth it.
Ann, what treatment are you on now? And where are you in Atlanta? I have a friend in Roswell.
Hope you all have a good day. I have my PT today, but am about to quit since it doesn't seem to be helping this time around. Marybe
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I had my first chemo today....went to Tom baker cancer hospital here in Calgary and was ready to have the chemo...so I took my emend an hour before my chemo then went to the medical day care unit, the nurse put me on iv....he administer 2 additional anti nauseous drugs...then when it's done was about to give me my chemo cocktail.....opppss not again...my nurse forgot to order the chemo meds at the pharmacy.....what???? I was like are u serious? So the nurse on duty said they had to make it and will take 2 hrs....oh geeesh...well what can I do? So I waited for 2 Hrs
....ah I hate waiting...so 2 hrs after the chemo meds arrived....yay....I said ok now I am ready for it....first day wasn't bad....except that my onco nurse pretty messed up wiu scheduling and prioritizing things....I am thinking of changing my onco...0 -
I don't know if I would immediately change oncos, but I certainly would make sure he knows what happened and that you were not pleased about it....especially it being your lst treatment...what a way to start off. I would have been really POed. Half the time the doctor does not know what goes on in the treatment room or reception area. My onco used to have a receptionist who was downright hateful, would make you feel bad for disturbing her. When we filled out an evaluation they sent out, I think a lot of people must have complained about her because it was shortly after that they replaced her. One day I had to wait because the truck that delivers the drugs had not arrived yet....I was going to go home and come back, but right when I was leaving the UPS guy showed up so I just went back in and said OK, I am staying..I was still accessed, just had the tubing taped to my chest. I think if someone is scheduled for treatment they should have everything there that they need to provide that treatment...know things happen, but Jeeze, it's not like we are there for a manicure....we are there for something that is going to help save our lives!! It's a stressful event, especially the lst time. I hope your next treatment runs on schedule and also hope you don't have a lot of SEs from this one.
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I have progressed after Taxotere Carboplatin and Herceptin. Had axillary clearance and 7 weeks of rads last year.
I have decided no more chemo. I have not recovered from the other yet and I feel the side affects of neuropathy, pain, chemo brain were ignored by my onc. I currently go to my family doctor for treatment of quality of life issues. My onc will not let me have neurotin because he feels like it will encourage the cancer to grow and e-mailed my family doc to not let me have it. I have to go to a neurologists for it if I want treatment. Since I have to do so many other doctor appointments I cut back on seeing the onc.
I am going for a second opinion, which I really don't have the energy for as I am tired all the time.
I have put myself into some clinical trail data bases in the hope of getting a vaccine. I feel that might help me buy quality time.
This post may seem very crappy, but it is how I feel.
I am glad to see some trails that are addressing the quality of life!!!!!! Quality of life is important to a young single mother. Sometimes I consider my self lucky, because I have choices, unlike a quad.
Thanks for letting me aireate.
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Ma111,
I really get it that you feel like a hockey puck whacked around without anyone really paying attention.
Can you get to another oncologist ASAP? You lose time with no treatment.
But you deserve the best, the latest, the finest treatment that cancer centers have to offer! I wish you could get Abraxane, but I guess not?
Yes, we have choices, even though our families and doctors basically tell us to DO what they say or they will think we are crazy or selfish. It's just that people do want you to stay HERE with them!
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Klo, Are you doing abraxane? That was the one the onco in TX said I exhibited extreme toxicity to....I am not saying it did not work, but it was just too hard on me. There are a lot of other chemos out there with far fewer SEs.
ma111, Neurontin is not without its own SEs. I have a friend who is now a part of the vaccine trial...the requirement you have to meet at Stage lV is that you are stable. I am sure she would be happy to talk with you about it.
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Hi, Marybe,
Yes, Abraxane since September (when she gave us the death sentence talk). Onc first mentioned other taxols that sounded like Medieval torture. As you know, Abraxane theoretically has fewer SE due to the albumin-nanotechnology. The initial high doses drove my counts down harshly and made me sick However, the main SE that my Onc pays attention to is NEUROPATHY. Anyway, with 2/3 of the original dose, 3 times a month, I am very active and never have low counts.
Don't we all just wish that everyone could have the mildest SE's? Where's my magic wand......
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I do feel like a hockey puck.
The bad thing about er-pr- and her2 + is that is develops an immunity to chemo, mine did with the Taxotere Carboplatin and Herceptin. Chemo would only buy me a few weeks of sick time.
I am going for a second opinion. The onc and I talked and he agreed that the trails offer more potential for longer functional life. The bad part is my adrenal glads are not working and my BP bottomed out, so they put me on high dose steroids. Well, I got out of bed again, but cannot do the vaccines untill I have been off steroids for 4 weeks.
I like this forum and find it helpful as we can freely talk and we all understand what we are going through and don't tell each other stupid stuff. My psyc has problems talking about morbid things and says, "well let's asume you are going to live",Like hello, but he lets me have ativan so I keep going.
Life just palin sucks soemtimes as you all know.
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MA11, I am not a PollyAnna, but the psych is right, you should assume you are going to live. I have been thinking I am going to die for so long that I am starting to think it's just not in the cards...not yet anyway. Today I went for a physical since I need one before I have my cataract surgery this month....had not seen the GP for awhile and he was marveling at how healthy I am (other than the fact I have cancer) and he said he gets the written reports from my onco and on paper it sounds pretty bad, but then he sees me and is reassured. Then I went to meet with the guy who is in charge of my IRA funds and we were talking about when I am going to start needing the money to live on since I do plan on filing for the SS disability one day and as I told him, Well, to tell you the truth, I keep thinking I had better spend it because I am going to die, but then I just keep plugging along and actually feel fine so don't do it. Instead of thinking that we are dying of cancer, we need to think we are living with it because that is what we are doing. I hope you get some options when you go for a 2nd opinion....also hope you can do the vaccine. Maybe you only have an immunity to ones in the taxol family and anothr chemo would work...there are so many out there and lots of different combos. At one point in time I said I would NEVER do chemo...now I am on my 4th one. I am not telling anyone they should or should not do something...it is an individual choice, but I do know not all of them make you sick and many of them do work.
Klo, I only had to have a shot of neulastin or whatever one time when on Abraxane since it did not cause my counts to go down, but I did have neuropathy in both feet ( quit when it was going into my hands), lost my nails completely on my toes and my fingernails that I did not lose were infected and smelled just awful, the tearing eyes were so bad I could not see at time, my ankles got so swollen they hung over the sides of my shoes IF I was able to get shoes on and I lost my sense of taste totally ...however I sit with women in the treatment room who have been on it for years, and one of them has not even lost her hair!! I got it weekly, but do not know why my onco never tried lowering the dosage.
Sweetangel, How are you feeling after the lst treatment?
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Marbe & klo,
Thanks for the response. Right now I'm am on steroids because my BP bottomed out and I could not get out of bed for days. It took a few days of 50mg of steroids to get me functioning again. For the vaccine trail I have to be off steroids for 4 weeks. I have tapered down to 20mg a day. Today I am trying to get to 10, than next week off completely if I can maintain a blood pressure. I am having problems with my adlenal glads not working. Might be from chemo damage or autoimmunine disease. It's not a pituatary tumor as my head scan was fine.
I also had neuropathy to the point of not being able to get out of bed and had trouble with taking a shower. I was scared to walk down to the basement to get in the car to buy groceries.
With you guys being on chemo all the time, how do you get things done? I live alone with my daughter, who is now 17. She drives now and will go do the food shopping when I am not well. I want to be able to walk, talk and get out of the house.
I am going for a 2nd opinion.
This stupid cancer showed signs of becoming resistant to the Taxotere Carboplatin Herceptin after the 3rd dose. Things shrunk at first, than started growing again. Realilisticly, what would more chemo do for me? I know I need to ask the 2nd opinion doc that. Hopefully he will be honest with me. Right now I have more faith in the vaccine helping me live longer while maintaining the function I have left.
Where is your friend going for her vaccine?
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She's in the trial in Baltimore, MD.
I will write more tonight....today is our early day at work and I still have to shower. The main thing chemo is doing to me now, is messing with my thinking and I am going to address that issue on Wed.
Hope everyone has a good day. We just gotta take it one at a time.
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I started TCH the end of Jan, just had round 4 yesterday. Getting Neulesta today and have been handling the SE's pretty well. PET scheduled for 4/22, Onc says that we will continue the TCH until there is progression or I can no longer tolerate it. The tumor in the breast is no longer palpable and it was at one time visible to the naked eye. So I am hoping that the bones mets are also regressing, they are quite extensive.
Marsha
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Dear Special Friends,
FYI. this is the forst group that I feel truly connected with since getting the big, bad news last fall. All the local "survivors" are where I was 13 years ago: "la la la it aint gonna get me again... la la la" - which is where they SHOULD be- then they see me and ...."oh, bummer...." And I know I look like shit but I get tired of putting on eyebrows and scarves, etc. to go out. My real friends take me as I am.
My lovely Onc used to explain things so clearly. Now it sounds like she is saying as little as possible.... she says no one really has the answers at this point.
You have the "Never give in!" types and the "Your'e dying, enjoy life!" types.
Did I bum you out?
Love,
Kathy
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nmmom3-----
Sounds really tough! How old are your kids?
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K Lo
Actually I am tolerating the TCH pretty well, My daughters are 26,24, and 19. The 19 year old lives with me and is quite the mother hen, I wish that she would spend more time with her friends she is is going to a local college and doing well but she spends most nights at home with me.
What treatments are you doing? I was stage 4 from diagnosis.
Marsha
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Abraxane only for me. It is working well: mostly halted disease progression, dose right now tolerable.
SE: I drop things! Crash! in the kitchen. But last autumn, I fell 3 times, so that's an improvement. If I can stay like this for a year, it will be fine with me.
My hair is growing back, which occurs in 5% with ongoing taxol, per my Onc. So the scarves/ hats situtaion will be gone. Never met a wig I could stand for more than an hour or two.
Feel bad for my loved ones who do not know what to think: whats next? will she....? when...?
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Marybe just looking at forum and regarding your constipation, I live in New Zealand and we use kiwifruit to help with bowel movements - maybe you could try them for a change.
So far the Xeloda is working fine for me. It appears I am ER- as Letrozole (Femara) did nothing, so will be on chemo for the rest of my life, but so far no SE worth mentioning so fingers crossed.
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