Chemotherapy for Stage IV
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Hello everyone! I too have been lax in posting, but I do lurk..me bad?
Glenna - I amy praying the Taxol works...but Yikes...that night you had was horrible. Hope things are better now!
Laurie - I hope you keep fighting...altho I can only imagine how tiring it can be. I pray you find a trial and/or something that brings you some relief and more importantly...time! I hope Jennifer's link is helpful too.
Kimber - Glad to hear you are going to give afinator and the other meds a try. I'm praying for you!!
To all - I pray each day for everyone and truly hope that you all find some Peace and Joy during this Holiday Season!
Love, prayers, positive healing energy...ALWAYS!
Sue
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Another decadron night! I had my 2nd taxol today. Feel good. I did talk to my onc about the pain I had last week. His hunch is that it was the effects of decadron running out. He didn't say it exactly that way but my brain isn't working. Anyway, he said to take the pain meds when I need them and to quit worrying about being an addict. LOL! He said if it happened this week that he would write a prescription for decadron and taper me off it slowly next time. Onc did clarify that I would be 3 weeks on and 2 weeks off. He said he screwed up last week when he told me 3 on, 1 off.
Kimber, so glad your onc is letting you skip the dec. 24 treatment.
Laurie, I hope so much that they find something that works for you. Thanks for writing and catching us up on the goings on in your life. It sounds like you are having some beautiful family times. Have you stopped working yet?
KeepingFaith, Sorry I'm no help on the er-pr- h+ treatment protocols. I am opposite you on hormonals. I think it might help to start a new thread with your question in the title. That way you'll reach more folks with the same hormonals.
I'm like MemaSue, lurk a lot, write not so much. I do love keeping up with you gals.
I am ready for Christmas except for wrapping a few gifts for my grandson, decorating sugar cookies with my granddaughter (did them with grandson last Saturday), and of course, the food for Christmas Day. Oh, and sending out cards. I do a little at a time and some of them go out after Christmas. Try to stay in touch with out of town friends to let them know I'm still here .... LOL! Seriously, one year I didn't get cards out and there were people who thought I'd died!
All of you dear friends, enjoy your holiday whatever your faith may be. For me, Jesus is the reason for the season and there is nothing more beautiful than a candlelight service on Christmas Eve. I still get such pleasure out of putting up the nativity that was in my parent's home when I was growing up.
Merry Christmas!0 -
Hoping you all have a Wonderful Holiday....Prayers always,
Sue
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Wishing you all a Merry Christmas. Enjoy your families. God Bless. Jean
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Blessings to all and the happiest of holidays to all my precious sisters
. Enjoy your families and don't eat or drink to much lol. But be sure to make special memories!
Love and hugs
Kimber0 -
A very Merry Christmas to all, and to all a good night
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Merry Christmas everyone! I start carboplatin tomorrow morning at 8:15.
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Hope today is a lovely holiday for everyone. LuvRVing: Good luck with the Carboplatin tomorrow. I will be thinking of you while I will be starting Abraxane. We will be getting it at the same time tomorrow.
If anyone has any info re: their experiences on Abraxane, I would appreciate hearing it.0 -
Merry Christmas everyone.
Kimber, I meant to tell you I saw just about every Christmas movie ever made while recovering here. Thought of you. Christmas movies are actually kind of uplifting. I hope and pray the affinitor works for you. Seems like its terrific for some, I am hoping you are one of those.
Alesta, think of you so often. Glad you posted and it does look like Christmas is going to be beautiful for you. I am happy for that. Maybe if you break from chemo for awhile you will come out strong enough to try a new one. Hoping you make it past August.
Glenna, what is with that pain. That sounds like you need to get something checked. Kind of sudden and not good. Have to remember sometimes we get something that is not cancer but is dangerous. Get better,soon..
Keeping Faith, I now have pleural effusions that come and go. They go when they get drained
Doctors say they are just watching them. Mine are not cancer, well, so far not. Doctors say some people get them and docs watch them. I hope yours are not that bad maybe in the watchable category. They are a pain if you ask me.I meet my new onc on Jan 8th. Hoping for good news. Hoping for a great new year for us all.
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Sounds like tomorrow is a chemo day for a number of us. Hope all goes well fir all of us. just judie, never had abraxane so no help there. i do think I've had some form of carboplatin at some point in this cancer journey but perhaps named something elae. it sounds all too familiar. I'm just glad I have afternoon appointments. I am going to enjoy sleeping in! Our sweet grandson spent the night with us Christmas Eve and was awake at 6:00 a.m. To see if Santa had been here yet. We hadn't planned on having him wake up here so had to hit the stores yesterday to get some "Santa" toys. I hd only bought him clothes and shoes and we know Santa doesn't so that!! Soleil, didn't have the pain this week so I guess nothing to worry about unless it happens again. I did "nearly" pass out while doing some christmas shopping at best buy last Thursday but was lucky to have a doctor looking at cameras notice my plight. He sat me down in the floor, took honey packets out if his pocket for me (told me he gets them at chick filet and that I should carry some), and sat with me til I felt better. I got pretty quick service after that and made it home okay. Had been up all night on decadron and was really tired. Soleil, I know you're now in the middle of your big move. You are so brave to have given up your business and heading out on a new chapter in your life. You are amazing!!
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I have been posting on the Taxotere site and have posted on the Xeloda. I have a question for anyone that may have taken a chemo break. My oncologist asked how I was doing with the Taxotere and I told him fine, well as fine as you can on Tax, he said that maybe when I go see him on January 10, that we could take a chemo break. I have had 6 doses of Tax and I told him I thought I would rather continue instead of taking a break. He said he would prefer that also but thought maybe I would want one, he is just thinking about my well being I guess. My markers have gone down 12-15 points each time except last time, they only went down 2.8 and I know that happens, and can in fact go up. I am having a bone scan and CT scan on the 31st and will find out what the results are on the 10th when I see him. He said we would wait and see what the results are before making a decision. I guess my question is has anyone taken a break, what did it do to your tumor markers if anything, was it hard to go back after the break knowing you had to do another 3 or 6 rounds of it, and would you do it again or keep plugging away until you were done? I know that no one can make the decision for me but it helps to know other people that have done this and how they responded. I did not ask how long of a break he was talking, it would only be from the Taxotere and not the Xeloda. I am just thinking that I would rather ruin the winter months, it is cold anyway, than the spring or summer months, plus knowing I had to go back to it would suck. Least of all but something I was thinking about, my hair would start to grow again and then start falling out again. Thanks to anyone for their opinion, I know it is my decision but I like other opinions and experiences.
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Jeanie: I have not taken a chemo break, but sometimes want one. I started Taxol in April 2012, but had progression and was switched to Gemzar. Wish I could be more helpful to you in deciding on a chemo break.
The Gemzar does not seem as gentle on me as what I have read on these boards. The first weekly dose was a breeze, but 2nd and 3rd left me with flu-like (achy bones) and fatigue.
Low WBC counts, so had a lower dose for the 3rd week. Had my one week off and went Christmas Eve for month #2 cycle. WBC did the opposite and was too high. The nurse said they call this "rebound." Has anyone experienced this?
Neuropathy: I had numbness in my toes from the Taxol which has suddenly turned to painful feet. I don't quite understand why the numbness would turn to pain after stopping that chemo. Is this something others have experienced?
My hopes and prayers for us all to get good news.
Jean
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Ladies, I don't know where to start and I am certainly lost in the care that all of you are receiving and the side effects you are having.
I have complained for months with pain in my left thigh and the swelling that has been in the leg. My new oncologist ordered an MRI. It showed significant cancer in the hip area, shaft, throught the femur. On Dec. 14th I had an IM Rodding of my left femur. That was on Friday and I was discharged on Monday.
I had been on Abraxane since June - we felt that the Abraxane was not doing its job - not totally - with this kind of news. However, on our scans they stop at the pelvis, the femur is never scanned unless there is a problem. I think that should be changed. I am doing well from that surgery and am full weight bearing.
I was home for a few days and then was admitted to the local hospital with what they felt was a post op ileus. Well I was admitted to the hospital after being in the er from 3 pm until 1 am. The doctor came to my room around 4:30 am. He was a local surgeon. He set my fluid rate at 150 ml (cc or whatever). I never saw him again. He would not give me pain meds equal to what I was on; refused to return all calls from the nurses. I began to swell with the rate the 100% Saline was running. I was only getting a few ice chips. I got worse as the day wore on - calls from my daughter (RN) and SIL (MD) to the attending would not get a return call. My sis told my daughter she would not recognize me when she walked in the room that I was so swollen I got in pulmonary distress and had to go under oxygen. The doctor refused to all the Director of Nursing also. When my daughter arrived she did get the nurses to go against his order and lower my IVs to 20 ml (cc) rate. On Friday she ask when he would be making rounds and was told it would be later that afternoon and we could wait or we could be discharged - she said "get the discharge orders ready".
I am home - doing great from my surgery but boy did that last hospitalization take my energy.
I am scared - we have not found a drug that will really knock back my bone cancer. While I am recovering from surgery, they have put me on Aromosin. She mentioned maybe using this with another drug - although my previous oncologist tried that and his patients had really harsh side effects. She also talked about Xeloda. I don't know but a year ago when all of this started, I was so hopeful and felt we could manage the bone mets - that is what we were told it is a chronic disease. For me, it just seems to keep marching forward.
Sorry that I haven't been around but haven't felt like posting and things have just been crazy for me. Will try to stay in touch more. Would welcome any suggestions any of you might have too.
Failed to Wish you a Merry Christmas on time but saying it now with it carring all the love and warmth the words convey.
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OMG, Naniam. I think I would be writing a letter to the hospital adminstrator threatening an attorney. I can't believe with all the calls the doc didn't call back or at least check on your situation.
I was on Xeloda for 7 months and it was very doable. It has since failed with progression to lungs and I am now on the Aromasin/Afinitor combo. That may be what you are talking about. I have only been on it for a couple of weeks so I don't have too much to report yet. I have developed several mouth sores over the holiday and today am feeling quite achy. I'm guessing the aches are from the aromasin. I would go back to xeloda in a heartbeat!!
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Nan - My heart aches for you. I wud threaten lawsuit as well...that is jes crap what they did to you. My mets are bone also but the Xgeva/Aromisin have kept it in check for 15 mos now. Have they tried you on Xgeva? As Frapp said...bone aches are from the aromisin. And not just where the cancer is either. Right now I am hurting (severity fluctuates) big time and need to call it a night. But wanted to address you first.
Jean - Don't kno about the Gemzar and affect on WBC. But I had TCH and have Neuropathy in my feet. Have been off the Taxotere and Carbo for 15 mos, but have remained on Herceptin. Point is...my feet go from numb to pain and back again. Doesn't seem to be any rhyme or reason. Wish I cud b of more help.
JeanieB - I had Taxotere/Carboplatin/Herceptin 6 treatments. Onco never worried about markers...they can go up and down. Onco relied on scans. So I think I would see what those scans show and then discuss with your onco about stopping or taking a break. Keep us posted.
BIG HUGZ, Love, Prayers, Positive Energy to everyone,
Sue
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Jeanie, I was forced to quit taxotere because it was causing a lot of foot pain. I didn't want to stop because it was working and introduced me to NED. My onc didn't give me a choice. I did have a few months break before starting gemzar ... To get the taxotere out of my system. While I enjoyed the break, I was worried the entire time that I should be doing something to fight the cancer. I would prefer NO breaks but have just finished another 2 month break between doxil and taxol. I did lots of fun things that I probably wouldn't have done on chemo, but then again, the worry about what's going on in there when I'm not doing anything.
Jean, yes, I have neuropathy and it sometimes turns to foot pain. The nature of some chemos??
Oh, Naniam, Brenda, what a terrible time you are having. Your DD nurse and SIL doctor must be having fits. Glad DD got you got out of there. I would stay away from that local hospital forever!! Please don't lose hope. My onc says there's plenty ups the arsenal, so give this next thing a try. Hope the swelling is under control. Did they give you something to make you pee? Good thing the nurses there listened to your DD. they must know that doc isn't competent and would probably happily testify against him if it came to that!! First and foremost, YOU take care of YOU. Stress from lawsuits is not really what you need. Let someone else in the family make those decisions. Know we are sending hugs and all the love in the world.0 -
Naniam: I would write a letter to the administrator just to get it "off my chest." You wrote that you are scared. Don't feel alone there......I am too. Many are scared here and we're all just wanting stability with this disease. Hoping for the right combo for all of us. I was switched from Zometa to Xgeva. Onc said the Xgeva had some chemo-like qualities for some.
Glenna: I can understand to take a break would make you wonder what is happening. My onc has mentioned radiation twice now for the left side of my chest. If that is another step I have to take, I would want a break from chemo at that point. While in treatment for stage IV, I was diagnosed with breast cancer in my remaining breast. Had second mastectomy last year for that. I've not had much in the way of remission yet.
It seems like we all go through so much. Reading about all your trials is frightening for me at times, but also helps me to realize I am not alone. Prayers and thoughts for all of you.
Jean
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jeannie-I took a break last spring for a month. At the time I had been on Tykerb/Xeloda for 5 months. I had some hand/foot things and the usual bathroom stuff but wasn't in too bad a shape...but I was going on vac and I am a big gardener and I just decided I wanted to opt out for a month-so I did. What it really amounted to was I was on my off week from the Xeloda and I just decided to go for it. By the end of the month I felt so great that I knew whatever the consequences were it was worth it. I went on Vac feeling normal, got all my flowers ang veggies planted and mulched and had energy to spare. I scanned shortly therafter and had major progression-but you know what? If it was going to up and kill me for a months break-SCREW IT ANYWAY!!!! I do not regret it at all. My previous scan had been mixed reviews anyway so the combo wasn;t really working all that well anyway.
I am on somewhat of a break right now. I agreed to scan befor Xmas but told him I WOULD NOT change drugs during the holiday. I am on Perjeta/herceptin and it is a miserabe failure. I did 6 tx with the TX and it worked great but apparently on it's own not too good. I will be going back on Taxotere next TX. I just couldn;t go into the holidays not being able to eat and being tired and crappy. So I will have been off of it for 9 weeks when I get my next one. I feel fabuous and have ever since I stopped it. I am ready to get back on it-I know I can do it and I am going into it very stron physically.
I think breaks are an essential part of the treatment -he only wanted to put me back at 50% but I told him I want the full dose and we will see what the next scan brings. If we are moving in the right direction maybe we can dial it back a bit in the spring. Like you said now is the time to feel dreary-it matches the weather. I will save my feel good for then.
I also have the advantage of being off the entire holiday season and knowing i am going back on the Tax I can take care of some nagging household issues while I am feeling good.
It acn't always be about the fight-I think we have the right to feel good once in a while also-but you have to be able to take the news if the progression happens. Hope this helps
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lilylady - Thank you for you input. I also was on Xeloda and took a break from it in August so we could take a trip to Alaska, my markers were gradually going up even on the Xeloda, but after the break we scanned and it had progressed to the omentum, markers were up 40 points. I was expecting that so it was not a shock and I do not regret taking that break to take the trip. I also agree, along with my oncologist, we need to have some "free" time from the chemo, but it is scary. I know I will fight this for the rest of my life and be off and on chemo so I have resigned myself to that fact. I was just thinking if I continued on with this for another 3 or 6 times that maybe I could take a year off of chemo other than the Xeloda which I am still taking anyway. I keep thinking if I take the break now that maybe I will have to do more treatments of the Tax than if I kept going. I trust the onco, he has been my doctor for 20 years so he knows me well and I trust his judgement completely. I will wait and see what the scans say and go by his judgement. I know he is only thinking of me and wants me to have some quality of life while going through this. He has told me I am highly sensitive to the Taxotere, most people handle it well, I am one of those that has lots of reaction to it. I get it on Thursday, by Saturday at noon I am fading, Sunday wake up with sore tongue, I am off balance, blurry vision, can't think right or remember anything, Big D starts, and Monday is worse, by Thursday I am dehydrated so always go for a liter of IV fluids, potassium, decadron, counts are .5 or .6 so get a Neulasta shot and am quarantined for the next 4 days, then things start to get better so 10-12 days out of the 21 are a blur. When I am at my good point I think oh this is not so bad and I can do this as long as I need, but during the "dark period" of those first 8 days I am wondering when it is going to kill me, and that is not me at all, I am an upbeat person, in fact the onco has commented on how great my attitude is. Of course those dark days I don't tell anyone what I am thinking, except on this board, because I know people can relate to it and know what I am going through.
I have rattled on long enough but I appreciate everyones input on this subject. I know we need to do other things and fun things while going on this journey. I just have to forget I have cancer and live life like everyone else. Thanks everybody for listening and responding. I am so thankful for this site. Happy New Year to everyone and May God Bless you and your familys.
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I have been off treatments for 6 weeks by the time I start treatment again in January. I had to stop one week because of neuropathy, then it was my week off and then the need for surgery. It made me real nervous to be off treatment; it was a mental thing of the cancer not being controlled. I know that cancer does not just grow at that kind of rate but yet the fear took hold of me.
My oncologist did start me on Aromasin to use during this time - it is one that I haven't tried. I haven't been on it a week yet. So I guess I need to move to another thread shortly. Until I know what the new treatment will be, going to hang out with all of you for a bit longer.
I have been so encouraged by all of you, the treatments you have had and the wealth of knowledge that you have.
I am doing good I think from the surgery. Has been 2 weeks today. I forget to use the walker sometimes and PT said that was ok - just use my head and if I am hurting or feel bad that day then to reach for the walker.
We have not dropped the issue of the care that I received at the hospital. I was on Lasix at home and to have my lungs filling with fluids from the rate of the IV running and not respond to the nurses calls that I get Lasix or even enough pain meds to make me comfortable is not something I am willing to let go. If this happened to me, then I fear it has or will happen to others.
My daughter, SIL and little girls are coming in for Christmas. They should be here anytime now. It seems everytime they see me, I have lost more weight and appear sicker to them. I hate that part. I try real hard when they are here - but sometimes I can't hide that I am tired. The top item on the oldest (7) granddaughters Christmas list was "I want my Nana to feel better again". It is so hard on our families.
Have a good night and a great weekend.
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Happy New Year everyone. I really hope and pray we have a good 2013 and find treatments that give us stability and quality life.
Went for Gemzar treatment this morning. Had visit with onc. He cancelled the Gemzar and has ordered a CAT scan of the abdomen and pelvic region which is scheduled for Thursday. He is also wanting my TSH checked. He did not think the pain in my feet would be from the Taxol which was stopped in November. He wants the CAT scan to make sure there is no lymph node issue pressing on a nerve causing pain in the feet. I'm not sure what to think of this. Any thoughts?
Jean
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Hi Ladies..I was wondering about gemzar/carbo. I do the cocktail week one and then just gemzar and then a week off..I have finished 2 rounds and this is my week off. I cannot hardly walk from the couch to the bathroom without being totally out of breath. I don't know if it's the chemo or the lung mets. I just can't hardly go and I hate this. No energy and just sitting on the couch..Has anyone else felt like this. The 1st round did not make me feel this way. Plus I just lost my husband of 20 years to a heart attack on 12-12 so major exhaustion and my heart is broke. Thanks so much for all of your help.
Terry
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(((Terry))) I don't know about Gemzar, I'm just doing weekly Carbo and had my second treatment today. I also have lung mets but I'm not having any SOB or pain issues. I am a little fatigued, but I had whole brain radiation right before Thanksgiving, so I don't think I have a good frame of reference. I do think Gemzar is tougher than Carbo. How are your blood counts, are you anemic? Because that will most certainly slow you down.
And then there is the loss of your DH. I cannot imagine...mine is my rock, too, and I'd be devastated. Who knows how that would impact you physically? I hope things improve for you while you have your week off.
Hugs,
Michelle
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Here is some information on Gemzar and Carboplatin that may help you:
http://chemocare.com/chemotherapy/drug-info/gemzar.aspx
Shortness of breath occurs in 10-29% of patients, so that could be causing your problem. Fatigue is common.
http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx
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I haven't checked this thread in a while. Really glad to see Alesta, Naniam, MemaSue, Kimber and others I've missed posting again, but hate to hear so many of you are having problems.
Gemzar stopped working for me so I started Halaven on Dec 19. First tx wasn't too bad. Second tx has been rough. I started my "rest" week today. My heart races and I get light-headed if I stay on my feet too long, so I feel sure my RBC count is down. Had to take a shot of Anaresp to rebuild RBC's 2 wks ago and shot of Neulasta last week because WBC's were down. If I'm still having problems tomorrow, I'll call onc and go in for bloodwork to see if I need another Anaresp shot. My appetite is better and I'm eating more, but I was shocked today when I weighed myself and found I've lost more weight. I'm down to 82.5 lbs. I'm only 4'10" tall, but I need to be at least into the 90's. I'm forcing myself to eat any time I feel I can. I'm afraid I may be too rundown to get my next chemo tx on 1/9.
I hope all of us start doing better soon and that 2013 will give us better results from our tx. This disease is such a horrible thing to live with!
Jan
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Oh, terry, so sorry about your husband. How heart breaking for you. I just can't imagine how lost you must feel. Hugs to you as you deal with such a huge loss and your own illness.
@Jan, can they give you anything to help you gain weight? Have you spoken with a nutritionist? I agree ,,,, hope 2013 is better for us all!!
Glenna0 -
Thanks so much ladies..Luv, I read the link you gave me and thank you so much. You are such an inspiration to me..It is so hard without my husband being here but I am just putting one foot in front of the other (when I can walk) and keep on going. I called my onc and I am going to go get my counts checked, hopefully that is all it is..Hope ya'll have a beautiful day!
Hugs!
Terry
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Terry, I'm so sorry to hear about your DH. I can't imagine going through such a loss on top of what you're dealing with.
I had the same problems you're having with Gemzar. It can be really hard on your blood counts.
Do you have kids or other family members near you who can help look after you?
Jan
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Thanks Jan..I went and got blood counts today and my platelets are down to 17. Normal is 140 to 400 I think. So I have to get a transfusion tomo. This scares the heck out of me. I do have 2 of my grandchildren living with me. I have had them since they were 3 and 4 and now they are 21 and 19. All of my family are in Texas. My onc told me to just watch myself tonite and get to ER if it gets to where I can't breathe and chest pains..Well duh..lol! Did you ever have to have transfusion? Again thank ya'll so very much. Hugs!
Terry
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I have taken quite a few breaks on gemzar and now on tax...the gemzar was because of the side effects and the tax is because I was ill, in aug/sept with an abcess and a couple of weeks ago diagnosed diverticultis.....haven't had it continuiously and have no side effects as of now.....going back on 3 weeks on a week off, this week, the last of my 3 weeks...hair thinned but have no other SE's that I know of...
Sandy
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