Chemotherapy for Stage IV
Comments
-
I didn't mean to set up an alarm re the Adriamycin. Damage to the heart muscle is a known side effect, but it doesn't mean it has to happen to you and what my cardiologist was saying is that she has seen to show up as long as 10 years after,....she did not say that it has shown up in each and every patient she has who had taken it. Since I have been getting it forever, I mean I started it Dec.7, and that's a long time, low dose weekly, we wanted a starting point. I had a heart issue before, an atrial myxoma which was discovered by accident when doing scans.....did not cause me any problems and was benign and they said could have been there since I was a child, no one knows.....BUT then it broke off and I was having breathing problems and I went for a chest xray which immediately led to a CAT scan and they thought I had a PE and admitted me to the hospital. However, it was not a PE, it was the myxoma that had broken off, somehow managed to get out of the heart chamber without killing me and lodged itself in my pulmonary artery which is why I now have to be on warfarin the rest of my life. So to make a long story short, maybe you will never have problems with the heart from chemo. Since I already had a cardiologist for this other deal, we have been monitoring my heart along with everything else for years.
Glenna, I am hoping to continue to be your "long timer".....yesterday I was having my doubts, was actually a little disoriented at work, my back was killing me, and I felt so tired and was thinking Jeeze, I don't know how much longer I can do this. Then I realized I had my treatment on Mon this week and since it usually hits me two days later, I was feeling it on Wed......used to be I would get my treatment Wed AM, get my steroids in the premeds and would be raring to go when I got to the office...then Friday afternoon I would go home and crash. I think the coreg may have something to do with also, plus have added Cipro to the mix for the UTI so might just be too many drugs. Who knows. Anyway, am happy to say after a good night's sleep, I am feeling quite good today.
Hope those of you getting treatments this week and scans are all doing well. Marybe
0 -
Hi all,
Great appointment with my onc today. My CT scan shows shrinkage!! Yeah! Not NED but shrinkage is good. My onc didn't have the wriitten report, just looking at it on the computer. Also the fluid in my abdomen has been lessening for the last couple of weeks and he said that is a result of the chemo killing off tumor clusters (my interpretation of his doctor speak). I did ask for a copy of my echo that was done in June before I started the Doxil. The LVEF was 55%. He has me scheduled for another echo on Aug. 9th. 55% sounds like a low # to start with .... Marybe, what do you think? I didn't even know there was a # they looked at until you wonderful ladies talked about it. Since the doxil is working, I sure hope the August echo is good! Something else to worry about! It's always something, right Gilda??0 -
Marybe, Glad you're feeling good today!
0 -
Marybe, not sure if you set off alarms but definitely something that those of us that have taken the Adriamycin need to be made aware of "if" we start having symptoms/problems. Think our PCP or a cardiologist would want to know that information - even from ladies that didn't end up stage IV. Glad you have had a good day today.
Glenna, stable is wonderful! I hope in 3 weeks when we scan I can say stable or lessening after the progression we saw last time. Love to read good scan news !
0 -
Brain MRI now behind me - not sure I will have the results before Monday morning. I have my Abraxane treatment at 8:00. We are an hour away from the center so think we will probably drive down on Sunday and spend the night. The hospital has a hotel they own and it is a cheap rate for us to stay there. DH has his yearly CT of colon and visit with his surgeon on THurs for his yearly follow up with colon cancer. That is also an 8 am appointment, so think we will drive down on Wed night again - not quite planned on this expense but probably safest and easiest thing for us to do.
Storms on Wed. got our TV so we will be looking for a TV later this afternoon- it is very hot and humid here. Time for the pain meds to keep me moving today.
I will say that normally I did not have mouth issues until the week of the 3rd treatment - started back on this last series of three Monday and I am having mouth issues already this time. Should I expect this to happen earlier with each series I take? DO you just use the Biotene? Thanks
0 -
Just had 1st treatment of Abraxane on Friday 7/27. Infusion was okay, but am now experiencing awful bloating and cramping! Also I was up all night from the steriods. Do other Abraxane users get the steriod cocktail before their infusions?
0 -
1701 - No, I have never been given the steroids with Abraxane. That was one of the wonderful features of this drug for me - I didn't have to have the premed steroids. I was told because of the formulation of this drug they were not required. Had I received regular Taxol, I would have gotten the steroids. I am thinking that is the case with most that have been on the Abraxane
My brain MRI - no mets currently seen. There is a very tiny lesion that they can't tell if it is a dural metastasis or meningioma so I will have to have another scan in several months. I think all of you know that I would have just liked a very clean scan with no future scans suggested. However, this is good, very good.
0 -
Congrats Naniam, I'm going to pray along with you for the meningloma.
0 -
I actually took notes so I could get this post straight-guess thay means I will type it all in and lose it.
Marybe-I guess we never realized you had pre-existing heart conditions. Whatever that thing is that broke off wouldn;t it eventually dissolve? Isn't that what the Wafarin would do? I know it is a blood thinnerbut not sure exactly how it works. So will they make a decision on how many more txyou can get? There was a thread called Herceptin Heart Attack back when I was doing tx last summer-like you said many of the girls regained function after they finished the H but not all. Some are still on a couple of drugs-beta blockers I think. Funny how ypi can forget you just got treated and time for the SE bill to come due-guess that what being a veteran is all about.
Naniam. Sounds like you have your trip all organized. I am like you-I would rather be there the night ahead and not worry about traffic, weather and morons on the road. about the TV-don't buy too small. Prices have come down so far on them you can get a pretty big set for not that much. I was never a TV person til I got cancer. I did buy a new set and wish it was at least 1 size bigger. I went from having a 13 inch portable to a 46 and now I think it isn;t big enough--too funny!! For what they actually show on TV all you need is a 13". And in regards to my treatment-a first line chemo patient is someone who has never been treated with anything that is chemo. You could have Herceptin or another targeted therapy but not chemo. So a Stage IV at diagnosis is the only perfect patient to get approved for the new HER2 drug-that would have been me 19 months ago. I am a 4rth line patientt because I have failed or finished 4 previous types of chemo. Wonder what line they would call MaryBe?
GlennaE-so happy for your shrinkage!! May you have many more good scans to come. something about your lung mets affected your vision? I am going to look that up tonight. That's also so good about the stomach fluids lessening. I have read how uncomfortable that can be.
Metropolitan-I just came off Tykerb and I ended up taking it in the morning first thing and had way less problems. Seems as though the bulk of women were taking it at bedtime or getting up in the night to take it but I swear it made me queasy every morning. When I finally switched I really didn;t have any other problems. My onc tried several times to get me to 5 pills but it never worked out. I started with the rash within days of it every time.
Well I really crashed and burned from the new tx this weekend. Like MaryBe I expected the pretreatment drugs would hold me til the weekend. I had the tx on Tuesday and had to leave work Friday because it got so bad. The weekend was a nightmare-I lost 10lbs in 6 days-will let your imagination tell you how. Got fluids today and going again tomorrow and I think I am going to live-or at least my head doesn;t feel like it is floating 3 ft above my body.
I had done Taxotere last summer and I never got sick til the last tx so I so wasn't expecting this. It was more than a double dose so I am hoping that was the cause. At any rate I had to go out on short term medical because with the temps predicted in the mid 90's there is no way I can work. I am going to stay out til the next tx and hope that I can return then. Felt like such a wimp but there wasn;t any part of my body that didn;t hurt-including my haor. It is already coming out after just 6 days-I lasted 17 days last year. I will probably wait a few more days before shaving but dang it -it hurts-like someone put it on my head crooked!!
Great news is that the onc says I will be getting the new drugs and they will find some way to pay for it. I thought they had told me if not approved by my next TX date (Aug 14) I would be moving on to Navelbine. Turns out that isn;t true. Happy about that-especially if it doesn't kick my butt like this-even if it does itseems like a miracle drug so I will just get thru it
0 -
D#^*%#@!!!!!! I lost my post going back trying to see who is doing Doxil!! I have to go feed the stray cat up the street and will be back to post later.
0 -
I hd 14 rounds of Abraxane. The steriods not only kept me awake, they made me crazy! I would be driving to the doctor and find myself at the airport, would have to use the GPS to get home! I asked doctor after round there if I had to have it and she said no. It was supposed to be for nausea, and I was not nauseated.
Maybe that would work for you.
0 -
I had steroids before abraxane, not sure why. They gave me quite a bit of energy on day 2. I am high on steroids, can't settle down. Kind of annoyed by the weight gain, but it disapated as soon as I had my break. NOt sure why I had the steroids, I guess they were worried about the nausea.
Glenna E....so happy to read your post! I hope you enjoy some good feeling times now.
Naniam, your news sounds good too. Happy to read this!
0 -
With my Abraxane the only premeds I get is Aloxi - that is for nausea.
0 -
I did get steriods with abraxane.....have gotten them ever since....know the mix is Ammend, Aloxi and decadron (the steroid) and then just this past year I told them I was feeling a little urpy, burping burps that tasted sort of like puke and they added Pepcid to the mix. I think the steroids are also to help with allergic reactions as much as anything.....know at one time with my first dose of something, proabably the Abraxane, but it could have been Halaven or something else....I need to look this stuff up,...they said we are giving you Benedryl and I then shouted BENEDRYL!!! I HATE benedryl.....it makes me go to sleep....so they then went and talked to the onco and said they were giving me decadron instead.....seems like a whole new ballgame to me, but whatever. I would rather be awake than asleep.
I posted a big long one before and will come back tomorrow and tell you about my appt with the onco today....opps, yesterday now. I hate it when I lose my posts....they need an automatic draft on here like Yahoo has.
Who does Doxil?.....I can't remember and want to ask a question about it.
Good night ladies.....steroids no longer keep me awake and the bed is calling me.
0 -
I am so amazed by all of you that work outside the home while going through chemo. I am on my 2nd dose of Taxotre after 4 doses of AC, and I could have NEVER worked through all of it. My husband has been doing the majority do the house work and child care as he is able to take a leave from work as well. I had some shortness of breath last week that prompted a lung scan, which didn't show anything in my lungs and happened to show shrinkage in my breast tumours and NED in my lymph nodes, so that was nice to know! The onc. Figures my shortness of breath is related to a drop in my hemoglobin. Now I just have to hope the mets in my spine are responding the same way as the breast and nodes...fingers crossed. At least this Taxotere hasn't hit me as bad as the first one did, now 2 more to go!
0 -
Soliel505 I received steriods too for my Abraxane! I can't understand why - and I really fought with oncologist with this but he stood by his prescription. I too was nervous and jumpy the next day (could not sleep at all). Am going to demand they minimize my dose.
0 -
When I complained about the steroids making me so sleepless, they did adjust the dose so that it tapers up and down (splitting pills) around treatment and that helped. Also, trying to take my doses earlier in the day helped as well.
0 -
Steroids are my friend! I hate the rise and fall but it makes my horrible knees feel like spring chicken knees. Feels so good to just go to stand up without worrying about wether i am going to fall back down. I got my other bag of fluid and more roids this morning and discussed NOT going out on medical because I feel like I could do it now. She reminded me there will be a crash coming in the next couple of days. I am just so not ready financially to be off.
Marybe I totally agree about the Benadryl. it knocks me out like a light. I am going to talk to my guy when he gets back from Vac-I think he pulled a trick on me before he left on Vac. They usually give the Benadryl in a cup along with 2 Tylenol before tx starts-I have always refused it so he finally took it off the orders. Well there it was in the pretreatment bag-couldn;t refuse it. So many things are being done because of the new Perjeta drug I am on. I am the first in the practice to get it so they are watching everything. I tell him they give the Benadryl so they can tape patients snoring and drooling on themselves to post on U Tube.
0 -
Me too LL, I like the steriods.....not so big of a dose that I cannot sleep, but whatever the dose is I get now. That weekend I was getting ready for my Dad's 90th birthday party, I asked them for the full dose and they gave it to me....I had red eyes and probably looked bad, BUT I got it all done. Looked at the clock Thurs night when I was boiling potatoes and getting food that could be made ahead done and was shocked to see it was 5AM....then made myself go upstairs and to bed.
I will recap what I posted the other day.....I got my treatment, the Adriamycin which I was no planning on getting til the next day, but as he said why make two trips. I tell you the difference between the two offices is night and day.....the one up north is a long drive, but it is so efficient. I barely get there and they call me back. I was only going to get my INR checked since they told me it might be off with the Cipro I am taking for my UTI....which by the way has now given me a yeast infection, but the UTI is better.....so I am sitting there in a treatment chair (they are not as comfy as the other office) and that was when the onco came, sat down in one and chatted with me and asked if I was sure I didn't want to just stay for treatment. He would never do that in the other office,...for one thing there is never an empty chair there. I still like going to the other office mainly because I get to see my chemo buddies there.
Anyway, I was asking him about the maximum dosage of Adriamycin....told him every doc I see, even the eye doctor has said something about how they know there is a limit to how much you can have in a lifetime and where was I? Told him I also know that from reading and my message boards. He said well, we passed it awhile ago, but it isn't applicable in my case since I get it weekly and also am being monitored by the cardilogist so we will only stop when she says to. Makes me sort of wonder if I am an experiment. He did say that when we stop this one, it will be Doxil. I asked, Doesn't that cause heart damage also and he said actually the SEs are not bad with it. Which probably means it will be hard for me.....seems like I always do the opposite....no hand foot symdrome with Xeloda when I took it, no SEs with Halaven except for constipation and I had to get that Nuelasta shot every few weeks while on it...Oh, and lost most of my hair on that one, forgot....no SEs with navelbine except constipation....same with Gemzar....and I can't even remember what all I have done at this point. I am sure however that being constipated for two years was the cause of my anal fissures which I am happy to say are better and I do now take either the miralax or metamucil daily.
I told him I want to go to Europe and I am going.....booked it last night. He said we could work around chemo schedule, but need to keep an eye on my counts. I think I am going to up to comfort economy class so I will have more leg room and can avoid blood clots and edema. My ankles are perfectly normal now and I am thinking it is the coreg...plus I am trying to push the fluids. I am now doing two coreg a day as prescribed, but have not added the lisninopril again. BP is lower than normal, but not really down the way it was when I did both of the meds.....think honestly it was too much too fast....easing into it seems to be working....or hope so...guess we won't know til next echo. He said the coreg is the important one for my heart so am hoping.
Jibb, So far as working....I think that is different for all of us, just as SEs are. I think working is good therapy for me....would lose my mind if I had to stay at home with my husband. He enjoys sitting around all day and since I do not, just being here watching him do nothing makes me want to scream. I have been very fortunate in that I feel good enough to work....have not had much fatigue with anything....it does build up as I go farther into treatments, but it never got to the point where I felt like staying in bed.....take that back, the Neulasta shots kept me in bed, it was like a sudden case of the flu...that stuff was worse than chemo. Money enters into the picture also.....I know what you are saying about that LL....I could not live on either SS or disability. Yes, my husband helps out a lot, mostly by providing my insurance, BUT the mortgaage is mine and I want to keep it that way. When it starts looking dark at the end of the tunnel, you can bet I am going to start taking big withdrawls out of my IRA and will work a lot less or not at all so I can do lots of traveling. My one friend was really sick on adriamycin and had to stay in bed for days at a time....so she couldn't work. I think it all depends on the person so don't feel guilty at all if you don't work outside the home......I am saying my prayers the Taxotere is working for you. Get through your treatments and then you can worry about getting back to work....don't worry about it now and let husband continue to help. NED....how wonderful.
Oh, LL....you had asked about the warfain dissolving that blockage I have.....it will never go away. A myxoma is muscle tissue so I now have that tissue stuck in my pulmonary artery after it broke off and got out of the atrial chamber. The warfarin keeps the blood thin enough so that it will flow around it and prevents the blood from clotting up around the blockage. The body actually absorbs clots eventually. It takes a long time. When I had that doppler a month or so ago checking to see if the emdema was a result of a clot ( it wasn't and I knew that before I went cuz I know what a blood clot feels like), the tech commented that the clot I did have earlier in Feb. was still there.....much smaller, but still there. So it takes a long time for one to go away.
0 -
Marybe, living in Canada has its advantages in terms of work leaves, etc. The crummy part is that I just changed careers two years ago to dramatically reduce the stress in my life and I was just starting to get to a solid place where I loved my job and then this had to come along and spoil it. Now my husband is considering a career change so he can potentially focus more on the care of our two young ones (age 3and 5), but which will come with significant financial impact. Kinda does a number on your head when you start to think about all the potential outcomes. But again, I know that I am so fortunate to live where I do and not have to worry about paying out of pocket for all the treatments and tests I am getting.
0 -
At my chemo clinic, anyone can refuse the steroids. Once I discovered that I was taking them, nurse told me I could refuse them. Steroids are not necessary for abraxane.
0 -
Hi everyone,
I've been away for several days. Had my grandson over the weekend then my DH and I met my cousin and his wife in Atlantic City for a few days. Didn't win any money but had a great time. Love feeling good these last two weeks before chemo. I can't try to address everything that's been said while I've been offline but will address the steroids. I guess I could refuse them but I kind of like being up all night by myself. I usually get a lot done and can catch up on sleep during the day. Fortunately, I am retired on disability so don't have to worry about going to work. One of the reasons I did retire. I couldn't do chemo and work. Marybe, I'm doing the doxil. Ask away. This next treatment will be my 3rd or 4th ... can't remember which. I didn't lose my hair. Have an echo next week to see how my heart is doing. Biggest SE is fatigue. I take a lot of naps. Naniam, great news from your MRI. Sorry you have to have another one but still, all in all, good news!
Love to travel but always good to be home. Taking my grandson to Busch Gardens next Monday and Tuesday for his birthday present. He's going to be 8 on Sunday. Then chemo on Wednesday so another two weeks of R & R. My sis from Winston-Salem NC is coming up to be with me for a few days and I'm looking forward to that. Missed you all.0 -
Glenna, I am in Winston Salem, NC tonight. Both my husband I come here for our treatment. DH had colon cancer 3 years ago and tomorrow has his yearly CT scan and follow up with the surgeon. I will be back again on Monday for my Abraxane treatment. Our trips here the last two weeks has been a bit much.
Steroids - my body does not steroids and I do not handle them well. They cause me great GI distress -my stomach just goes into spasms and I am miserable. Nothing helps the pain - nothing. That is why I was so excited when I didn't have to have the steroids as a premed with Abraxane. I have already talked to my oncologist about not using the steroids when the time comes - he has flat out refused to do that or to even reduce the dosage. I will have the discussion with him again and suggest the Benadryl.
God bless those of you that can handle the steroids - I just am one that can't and I truly dread the day when I have to use them.
Soleil, I wish I could refuse the steroids - I don't have that choice but I think it is great that you do.
Marybe, I also thought there was a limit on how much of a drug you could use.
0 -
Well, I did have the choice. Now with the allergy, choice is wiped out.
I'm getting super doses of steroids each infusion. I'm afraid to get on the scale.
Maybe I will try it tomorrow
I must say though that they are one of the reasons I'm able to keep going forward with my chemo .
So, they have their benefits.
I originally had steroids and benedryl each infusion. I swallowed it down without knowing why or what I was taking. When I did find out, I decided to refuse it . However, that happened when the allergy started. Doctor said to take them just to be safe. I'm glad I did . This is one of the reasons the reaction didn't kill me, so I guess there is a reason for it. But you are a different case. You are now in your third month of abraxane, right? So why is the onc insisting on the steroids? Did you ask him the reason?
0 -
Naniam, how far is it from Hickory to Winston-Salem? I lived in Kernersville in 2004-05 when my husband and I were separated. I moved there to be close to my sister and then DH and I got back together. Absence makes the heart grow fonder ??? Jeez, DH with colon cancer and you with BC. That sure doesn't seem fair. Hope his scans come out good. Back to the Olympics, then bed!
0 -
Glenna it takes me an hour. We always have to allow a bit more for accidents or working on the interstate. I go to Wake Forrest Baptist. So, if you visit your sister sometime, perhaps we could meet for lunch ! I live in Hickory, NC
Soleil, I am not taking the steroids with Abraxane ; only get Aloxi as a premed. When he started discussing my having to go on chemo, I reminded him that I had terrible stomach issues with the steroids. Later during the conversation, he remembered that with Abraxane the steroids wasn't required. I thought I had written it ok - apparently I have not fully adjusted to the increase in the Oxycontin to 80 mgs. a day. UGH !! How are you? When do you get your Abraxane treatment?
Nite everyone. DH CT scan was good; goes back in a year and will have to have a colonoscopy. We are thankful for the good scan
0 -
No steroids for me...yee haw! So, I went for the longer than long 6 hour infusion yesterday. It was just abraxane , no steroids. Although I was happy to see that, I was of course worried that it was some sort of error. Nurse said no, doctor wanted to try it without steroids.
It worked too! So happy for this.
So, I'm hoping the abraxane itself without a truck load of steroids will be easier for me. Steroids are great day 1 then the crash happens. So, now , no crash. I'm going to try to walk this morning. So far, I just feel a little tired, no big deal.
0 -
soleil505 I talked to oncologist and he agreed to cut dose in half.....some progress! I'm going to work on him eliminating them completely. Is your Abraxane infusion longer now that there are no steriods? Sorry, still such a chemo newbie.
0 -
Has anyone had fainting spells from their chemo?
This morning at the breakfast table I started feeling woozy and seeing stars. The next thing I knew my 5yr old is screaming mommy, my DH is dragging me over to the couch, and I just want to go back to bed.
I have had the woozy morning feeling before, but usually go to the couch under my own steam. This time I was OUT.
I am 9 days post Taxotere. Any thoughts? I've slept since it happened and don't feel well enough to head to the mediclinic.
Jlb0 -
Jib,
I would call the onc office and get it checked out. Did you call them?0
