Chemotherapy for Stage IV
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haven't had the abraxane, so can't talk to it. Just starting this metastatic stage of my life, so..kind of a newbie at it.
Had my 6th cycle of ixabepilone yesterday. She went back up to the full dose for that "last push" as the last 2 cycles we decreased it due to the neuropathy and bone/joint pain. The xeloda has been reduced since the 4th cycle, and now we're just doing one week at 1000 mg bid to close out this set of chemo. My peripheral neuropathy has affected my hands (numb) and my legs from my knees down. I wonder like so many of you....I want to be alive, so when do you say "this is not acceptable". Well, I've decided...this is not acceptable. My onc and I talked about it yesterday, and she agreed. A few spots of my lung mets melted, so we're at least at stable disease, heading toward NED. She agrees we're done with this chemo.
I'm getting a "chemo break" and she has also agreed that I can go ahead with the reconstruction I can never seem to get behind me. (failed latissmus dorsi implant a year ago, that had to be removed a few months later..threw me into renal failure, a seroma that took 3 surgeries and a year to heal from, an inflammatory cascade that also took a long time to recover from). Just when we were going to go for it again, he found the recurrence at the original site while on the table for the TRAM flap.
So, she's cleared me for that...and I have already called the plastic surgeon to schedule this puppy as soon as possible (she says I have to wait 3 weeks at least), so I can get somewhat back to normal, heal, and then start chasing these mets again. Not sure if we'll go back to a conventional regimen (I never responded to TAC at all...I have responded to ixabepilone/xeloda, but the side effects are not worth it) or into a trial. I'm thinking a trial, but we'll see.
I was resistant to talking to anyone about things, because I too, don't want to seem like I'm whining. There are a lot of people worse off than me. It is a weird thing to wrap your brain around...that this isn't necessarily fixable. It is doable, but maybe not fixable. It's scary to not know how long I have left...but then again, no one really does, so I shouldn't fixate on that. What would I do if I knew? Hopefully the same thing I'm doing now. Live, love my family, and keep on keeping on.
Anyway, I hope to post more, and interact and get to know you wonderful, brave ladies.
I have a blog (yeah, you don't have to read it) - but in case you ever want some more reading about someone dealing with breast cancer to forget about your cancer...
http://avirgoincancer.com enjoy or not. What is one more blog?0 -
No one here is a whiner!!! If we couldn't complain and air our aches and pains to each other-then what else is this site for? I say do you want a little cheese with your whine?!!!
I think that's how we learn when we hear what other people are going thru-and I always think of this site like a Florida beach...no matter how bad you think you look you can always find someone who looks worse!! There are so many people worse off than me but it doesn;t make my problems any less important. Or anybody' elses. When I first started this site I joined a chemo group that was just starting. There were only 2 of us that were Stage IV from the start-out of a very large group-but we pretty much all had to do chemo and surgeries and radiation so I was worse off but our pain was pretty much the same.
No one understands what it is like for us---so I hope no one ever thinks twice about posting. I always know there will be someone coming along to cheer me up or offer advice or just sympathize. Sorry I got a little long winded but I bet everyone else feels the same way.
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Kitten, glad you have a chemo break and have made plans to complete the reconstruction. I am not familiar with the one drug you are taking but then I've only been at this a short time myself and don't know lots of them. Frankly, to me that sounds like a tough regimen.
Liliy, I know compared to most ladies here what I am experiencing is minor stuff but you're right it is my stuff and it is overwhelming and scary. THis afternoon was bad/scary; had had some of this before but never to this degree: bad nausea and balance issues, vision problems along with one mean headache. I don't want to whine - don't want anyone to think that all I do is complain. I am hoping as I travel this journey my judgement gets a bit better in dealing with problems I'm having. Someone usually does come along and share and you know they get it and they help you deal with your fears. So thankful for that. I feel so inadequate because I don't know lots about many of these chemo drugs.
Marybe, so you did Adriamycin initially but were able to go back to it because you had not had "maximum dose"? I wasn't sure if they did that or not. Hope the heart does ok -
Nite ladies
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I don't understand why the docs are secretive about the side effects. Mine were.....even the hair loss. They said a few people loose their hair. I googled and discovered 85% of all women lose their hair. Now how does that translate to " a few"? I think they are afraid we will just chose to quit so they don't disclose all
I sure hope the abraxane is working for you. It will make the side effects a bit easier to take
Hoping for you!!!
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Soleil,
I'm not sure what the web site is but I'll try to find out. My onc prints out the pages that deal with se's that could possibly happen on whatever drug he gives me. He prints out the pages that are meant for doctors sort of as talking points for the doctors and lists all possible se's, sometimes even citing studies indicating the percentages of people who have experienced them. I'm sure there may be some SE's that occur that aren't listed but it's a good place to start. My ONC said I would for sure lose my hair on doxil but the sheet said a small % do. I haven't so I'm glad he was wrong on that. Right now I'm sitting in my comfy chair and my chemo notebook is in the other room so I'll check on it tomorrow. I think you could certainly ask your onc for a print out .... we should definitely be aware of all the possibilities.0 -
@kitten,
whoa ... you have a full plate! Don't ever be hesitant about talking about your issues here. That is what we are here for. Sometimes we are the whiners, sometimes we are the supporters, and sometimes we just hold each other's hands through the scanxiety times, chemo times, surgery times. We are also great at sending cyber hugs and congratulations when we get good reports. None of us want to be here but I believe each of us here wants to help our sisters through the crap that we all must endure! The neuropathy can be bad ... yours sounds really severe. I've always had it but never to the degree you are experiencing. I don't blame you for stopping. I would, too. I never heard of the chemo you're on ixabe ... whatever. I'll have to research that one. I'm kind of wondering what is next for me if the doxil isn't doing the trick. Always glad to hear one mentioned that I've never heard of before. Means there's more in the arsenal!!
@Brenda - sounds like scary stuff going on .... do you have an appt next week? I think you should tell your onc what is going on.
Someone mentioned going on taxotere .... it was great stuff for me ... put me in touch with NED. Unfortunately had to stop because of the SE's but I begged to be left on. Damn neuropathy and tripping over my own two feet. I'd go on it again if I could. It was definitely worth the hair loss!! Best wishes!!0 -
Glenna, That is what docs should do. I believe they should inform you of every side effect. Mine does not. I stay at this doctor because I am at an excellent hospital. Its one of the best in Chicago. They are concerned and have helped me with insurance matters. They are very high tech and I'm getting good care. They just don't communicate much. So far, they have not disclosed many things.
After being on this site for awhile, I realized most patients get their scans. I had never seen mine. so I picked mine up one morning before seeing the doc. Great sense of empowerment. I actually had excellent questions. After answering one, she asked me how I knew this particular piece of info. I told her I read it in the scan. She told me I should never get my own scan because I could misunderstand it. Only she should see my scan.
So, now I pick my scan up before seeing doc but I do not tell her I have it.
Kitten, Enjoy your much needed break from chemo. When chemo ruins your life, it is time to stop. My side effects were uncomfortable, but not life ruining.
HaHa Lillylady. Love the beach analysis. I enjoy this site, you are correct. No one understands this like we do. I feel comfortable writing one here. I also find lots of great info.
Hope everyone enjoys this summer day!
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I agree with Soleil, Lilylady....the beach comparison is priceless.....and believe you me when I was in Florida last month, I saw some women and found myself thinking OMG, I would not be caught dead going around like that. But maybe I should be patting these people on the back for doing what they feel like and not worrying about what others think. I just thank my lucky stars that most of my physical, visible changes treatments have caused to my body, I am able to cover up. The support hose cover up my veins and keep the swelling down....would not have gone out in those unless they were under long pants up until a few years ago....Now I wear them with my capris and think What the heck, they help and my legs feel so much better with them on. Quit wearing sleeveless tops years ago due to my fat arms ( a hangup I got from my mother always complaining about her own arms) and then after chemo when my skin got so it was looking like crepe paper, I went to 3/4 length sleeves, but they aren't always that easy to find. One good thing I did find out about retaining water, the wrinkles just go away. I really find these physical changes fascinating in a grotesque sort of way.....am always looking at new skin tags and fat deposits and new saggy areas when I am in the shower and thinking to myself Unbelievable, This is actually me. I still have my vanity....think that is all part of being a woman, but at the same time I am willing to put up with this stuff if the treatments are helping me and I still feel decent and like doing things. When I was reading the SEs that go along with the meds the cardiologist put me on I was sitting in the lunch room at work, only reading them because I wanted to see if this crawling skin feeling I was having was listed and I was making comments out loud, HAIR LOSS!!, WEIGHT GAIN!!....with me I tend to focus on the little petty things. Where our doctors tend to not mention SEs, the pharmaceutical companies list every possible thing that could happen just to cover their butts. Anyway, I do not think I will be going back on either one of the meds the cardiologist prescribed....we were going to do process of elimination to determine which was was bothering me....just felt downright weird, had chills coming out of the top of my head and was having trouble saying what I wanted to say( had that problem with my TIAs, but this was not the same...it was like my tongue was too thick and mouth really dry this time) and really doing a terrible job with numbers, inverting them and unable to dial a number correctly, but when I talked to the nurse ( of course my cardiologist is unavailable until Tuesday) and I told her what my BP was, she said stop taking both of them.....it was then86/57. Today it is 91/56 so I don't know if it is ever going back to normal....normal for me is low, but not that low. I think I need to be on something or they won't do the Adriamycin since I already am showing signs of heart damage, so doubt if they will give me treatment on Monday. This whole deal is certainly a roller coaster ride, isn't it?
I always go get my scans....mainly because I never have an appt to discuss them until the next week and I want to know what is going on. Sometimes I get confused, and like last time I was all bummed out when they said no change and I was expecting the tumors to be smaller, but as the onco pointed out to me no change is a good thing when before that things had been progressing......but in general I can tell what they are saying. I never get the CDs since those make no sense to me at all when I look at them, but I do pick up the written reports and if you note on them, it will say when compared to the scan of such and such date and you can pretty much tell from there if there is improvement or progression.
Naniam, I did not do Adriamycin to start with as most women with BC do....I was first diagnosed in 1990 and since all of my lymph nodes were negative and the tumor was very small after some thought and discussion the onco thought I could skip the chemo ( looking back this was probably a mistake and the onco I see now said I would have had it if it had been 5 yrs later) and they also decided not to do tamoxifen even though I was ER positive because he said that way IF there was a recurrence, they would treat me with tamox and that is what they did. A lot of things have changed over the years. The way I get the Adriamycin now is low dose weekly and up until they did they last echo, I was really not having any bad SEs....nails and hair loss, but I have sort of gotten used to those since it happened before. I have super dry eyes so am supposed to put erythromycin cream in them at night, but half the time forget and they are glued shut in the morning. The good thing is no neuropathy. How is your BP?.....in talking to the nurse, I found out it can cause headaches and vision problems.
Good luck with the reconstruction, Kitten. How long of a chemo break do you get?
Well, I have been babbling and apologize. My Dad is here and we are going to check out a German festival today. I am having knee problems today and have been for several days now so I am sort of limping around.....am sure people think I am his wife instead of his daughter, but he said Oh no. When we went out to eat the other night, my Dad and husband with their canes and me, the waitress was going to seat us in one place and then thought better of it and put us in a booth that was closer.....one of the perks that goes with being decrepit, I guess.
Have a good day everyone. Oh and I agree....whine away....we all have our down times and it is good to share because for sure we have all been there. It's not really whining anyway....it's telling it like it is.
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I have always gotten my scans before I talk to my doc about results. They used to fight me tooth and nail about it at the scan place but no longer. I don;t want my time with my doc being taken up by my reaction to whatvere the news is good or bad-mostly bad for the last 3 scans. I like to read it by myself and absorb it then when i see or talk to him I can ask valid questions. And if I need to cry or feel bad I can do that not in an office. The same lady has been reading all my scans so I trust her judgement on the activity level especially.
I had wanted to change to a scan place that has a brand new state of the art machine 10 minutes from my house. Then i talked to the doc about it he said yes they have a great machine but the people reading the scans there are not so good. I said they all come from the same office-the scan reader doctors that is-he said yes that's true but the 2 people assigned to this new place have less than 3 years experience. he does not trust them because he said he could see the scan pictures didn;t really match the reports. he said reading scans is not his forte but it was so obciously wrong he demanded someone else re-evaluate it. He said it happened several times so he no longer sends people there.
As much value as we all put on our scans how scary is that? And i wonder if he ever told them that? They have to go thru yearly testing-wonder how these people are passing? When they determine the activity level based on the brightness and the score can be from 1 to 20-(20 of course being the worst score) they have to have looked at a lot of pictures to gain that experience. They go to a huge amount of schooling to even get to do that job.
That was one of the worst part of my latest scan-my highest activity evel from April was only 5-that is barely above tumor level. Now some of them are in the low teens-especially the one that freaks me out the most. My biggest tumor is in a tracheal lymph node and it really grew and the activity level on it was a 13.
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Happy Sunday, all! I'm looking at this paper my doctor gave me. There's no web site that I can find but the top of each page says "Adverse Reaction Management" Doxil.com. There are sections titled: Teach Your Patients to Proatively Monitor for These Common Signs and Symptoms of HFS; Here are some ways to help your patients avoid infection; Let your patients know that anemia may make them feel weak and tired. Offer them these tips for feeling more energetic; Let patients know that thrombocytopenia may cause bleeding to last longer, and several others. It's about 8 pages. There's also an entire section about cardiac function. It's pretty inclusive. My onc doesn't only give me the print-outs, he tells me SE's, too. To all of us I'm sure it is obvious that we should be given this type of information. I can't even begin to understand any reason why an ONC wouldn't share possible SE's.
Although I do pick up my scan reports and blood work I can tell my ONC would prefer I didn't .... especially the scans. There are always things I worry about that he isn't worried about. For instance, my latest PET said: There is heterogeneous tracer activity within the lateral segment left lobe of the liver. This subtle area of increased tracer activity, SUV maximum is 3.1. There is physiologic tracer activity within the kidneys and bladder.
Of course I freaked out. He said it is nothing to worry about. He WAS worried about the progression in my lung and changed my chemo from gemzar to doxil. Maybe it isn't anything to worry about. Maybe it is but he thinks the doxil will get it. Maybe he figures the lung is enough to worry about. I just have to trust him on this. He's been my oncologist for 25 years and I know he has my best interest at heart.
Lilylady, he does have a "favorite" scan reader as well!
Marybe, that is some low blood pressure.
Kitten, I read your entire blog last night. Had napped from 3-9 p.m. so was up all night. Went back to bed at 6:15 this morning. #1, you are an excellent writer, #2 wow, you've been through the wringer, #3, your kids sound awesome, #4, so do your co-workers!
Have a great day, all!0 -
Naniam - speak up! We don't consider it whining...your last paragraph is very insightful. I for one have never considered the difference. So...you've given something to ponder and I thank you. That said, I am sooo sorry you are having such a rough go of things. Sharing what you go thru with each treatment is helpful and you may learn something that will help you too.
To you and all the beautiful ladies on bco....sending positive, healing energy and lots of prayers your way!
Sue
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With my oncologist, I find that he gives the most "common" side effects of the drug. I have ask him if the Abraxane, low blood counts, taking maxium prescribed Oxy meds is causing me the vision problems, headaches, being off balance which creates nausea. I think they are afraid sometimes to say "possibly" or "maybe". Yesterday really scared me. I didn't have double vision but just knew that both my eyes were not working together to focus - then the balance issues were as if I were a staggering drunk and the headache.
With the widespread disease in my pelvis, lumbar spine I've wondered if that is somehow making a difference as it becomes more unstable. I have questions tomorrow - I know the Brain MRI that I got him to postpone until this visit to reevaluate is probably going to be scheduled again but I've tried to educate myself so I can ask questions. I sure don't think I have brain mets - you would really have to pick me up off the floor!!!! I've never had serious BP issues - it is always elevated when I see him ! My PCP did put me on a very mild, low dose BP med near the end of the Faslodex as we did see a bit of increase. I had my glasses changed prior to learning I had mets. I go to the drug webside and look at the most common side effects and then I also read the adverse side effects. I don't think the doctors or PA's read the "adverse side effect section".
I always get copies of my lab work and any scans. We have an understanding that I want him to go over my scan results with me - talk to me about them, not just say stable or progression. Have only had one set of scans since diagnosis - the PA mentioned a very small lesion in my lung and pleura effusion had grown. However, my bone mets had progressed quite significantly - they were widespread and extensive when we found them. He told me he was not concerned about my lung - I understood that - his objective was to get the bone mets under control. He also does research and his patient skills leaves lots of room for improvement. That is a conversation that we have had over these last months also. I just knew that I was not the same person that went to him 6 years ago - that I knew I had x number of treatments, would be followed at 3months, 6 months for 5 years and then yearly. That isn't enough this time.
Do I trust him, yes. I just think he has a real problem "talking" to patients. One of his patients was in the waiting room and we got to talking and she had been seeing him for metastatic disease for 7 years. My DIL ask her if she had been in remission during that time - neither the woman or her husband knew what remission was. Just proves that some of us want to know, certainly are capable of understanding and talking back intelligently with our oncologist and some women are just content to do what they say and never ask questions. I don't think many of us here are willing to do that. Not at this stage of the game.
One thing the cancer center has started is that you can get a pin number and then sign in to their website as your name appears on their records. You can see your most recent blood work and office notes. I did find my most recent lab but the office notes were not up todate and none of my scans are there either. THis is all new so going to ask tomorrow if scans will be posted. Do any of you have this at your facility yet?
Soleil, think we are in similar situations with our oncologist - super hospital and is a teaching research center, high tech and everyone is nice but my oncologist communication skills are definitely lacking.. I told him one time he was not prepared to see me, he had not looked at my chart, had relied totally on the PA interview and her previous notes which were wrong. He has tried to do better - he just seems to always be in a rush. I even told him if he found me to be a demanding, difficult patient, the just give me some names of competent doctors for referral. He told me he would try to do better and to lets see if we could get through this together. I've certainly noticed in reading here that lots of women wish the communication skills with their oncologist was better.
Kitten, I'll have to read your blog.
Marybe, I hope you can get your treatment. If you have to stop the Adriamycin, have they mentioned what they would do next? I am finding I didn't know there were so many drugs to try - I know from the short time I have been here, ladies have been on lots of drugs and then go back to one later that didn't really work and it worked often in combination with another drug. Also, someone the other day was talking about giving a hormone positive woman, hormone therapy. That one totally confused me but something about it was short term and it kind of "reset" everything and AI in most cases would then work again.
Glenna, not sure if I can find a listing for Abraxane like that, but will type it in and see what I can get. So is Doxil a drug or a shortened name for one? Is it an older drug - I really don't know lots of these drugs. More familiar with Xeloda, Abraxane, Taxol and Faslodex but that is about it.
Hope this isn't to rambling - I came late and my Oxy has certainly kicked in. Tomorrow I see the oncologist, get Abraxane and Zometa. Will let you know what I find out about the "issues" or "side effects" I'm having. It is good to read others stories
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Hope all goes well with your appointment today and you get some answers.
I did the hormonal treatments for years and had excellent results with them...put me into remission and shrunk my tumors by 50%...did tamox, aromasin and faslodex....on arimidex for a very brief time, but he changed it to aromasin since he heard it got more dramatic results and for me it did.....but after awhile they stopped working and that was when we went to chemo. The onco I consulted with at MDA wanted to try me on the hormonal route again since I had been off them for close to 2 yrs and I guess many times they will work again, but in my case they did not. We tried Megace and Aromasin, but I opted not to do the halotestone (am not sure of spelling on that one).
My BP was only 84/49 last night......92/59 this AM which is better, but I am betting they won't give me treatment today if it is still low and also when I tell them I am off the meds the cardiologist prescribed.
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Marybe, that is a low BP and not sure you will get the treatment either. I'll check when I get home to see how things went for you today - if the plan has changed. Are you feeling ok with the BP that low - no dizziness, no loss of energy?
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Thinking of all of you who have appointments today. Marybe, hope there's some answers for you about the BP. I, too, doubt if you will get treatment today.
Naniam, the way my onc described doxil is that it is adriamycin packaged in fat cells. Supposedly less toxic to the heart. All I know is that it does a number of my white cells and I am tired all the time. Today I didn't wake up til noon. I have a scan on Thursday so will see if it's doing it's job. I've had two treatments so far. The third is scheduled for Aug. 8, I guess depending on what the scans show.0 -
I have to brag I have a wonderful onc-and I have a huge dr crush on him. He isn;t who I started with so I know what seeing a butthead doc is like.
The absolute best thing about him is you never feel like he has 1 foot out the door. As long as you need him in the room-he is in the room. He also doesn't double book so you aren't sitting inthe waiting room the whole time. He also looks in your eyes when you talk-in other words he isn't staring at the laptop when I am in there.
The best part is I start the new Perjeta drug tomorrow even though the insurance co is still denying tx. My guy is going to pay for it himself-that buys us 3 weeks more to try to get approval. Each doc in the practice has a slush fund they can use for anything-he says I am an excellent investment.
I also always get a kiss on the forehead and a hug. He makes me feel calm and confident=and I am a partner in making my tx decisions. I have never even met his PA=I have akways seen him. I wil see her for the first time this week on Friday. I have to do taxotere with the Perjeta and herceptin/ he is on vac so she wil look at my bloodwork.
Had to brag-I am crazy about him and feel very lucky. Dreading tomorrow-but I know I can do it-and I want to get back to the days of micro-mets and I jyst didn;t feel like Navelbine was going to get me there.
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Glenna, thanks for the explanation of the Doxil. Sounds like it is a repackaging of Adriamycin just like Abraxane is Taxol.
Lily, your oncology group has a slush fund to help with some treatments to get insurance approval - wow. Never heard of that one. I can say my oncologist definitely does not have those personality charactistics ! However, he was kind, gentle and caring today - not overly rushed.
Marybe, was hoping you had checked in. May have to catch up with you tomorrow to see if you got your treatment.
We talked about my symptoms and he had me do some fine hand, eye coordination movements - I think I did ok on those, didn't fail completely anyway. However, he felt we needed to do a Brain MRI ASAP - will be having the scan Friday at 6:15 pm. Know it needs to be done so we can figure out what else is going on to cause these symptoms. I have such total spine involvement, keep thinking this is spinal related somehow. Got Abraxane and Zometa today - two more Abraxane and then scan to see how it is working. Scans - ugh !
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Congratulations, LilyLady, Hope the new drug does wonders for you.
They gave me the Adriamycin.....BP was 110/70 there.....I question this, but didn't say anything. I told her I thought I was getting a UTI....have a real urgency to go and then when I do go, I really didn't need to, just feel that way. The preliminary test they did showed white cells in my urine, but they were sending the sample off to the lab to be tested. She told me to be sure to call the cardiologist tomorrow so I can be put on something....I asked her if my diagnosis is really cardiomyopathy and she looked at the report and said that was what was written down so I was telling her about this news program I saw on the news this morning about this little girl at Children's Hospital who has cardiomyopathy and is dying and is waiting for a heart. So she told me that it was most likely a very severe case and probably she had had it for a long time and that mine is most likely just mild so I am thinking Hmmm, once I told someone I had a little bit of lymphedema and was told there is no such thing as a little, you have it or you don't. She told me not to read too much on the inter net and I said Oh, I do all the time and I also get advice and information from my friends on the breast cancer message boards.
Naniam, Nope have not been dizzy at all.......yes, do feel tired....if I sit very long and always when trying to watch tv in bed, Bam!, next thing I know I am asleep. But this could be from chemo also I suppose, since it is cumulative. I think today was treatment #33 of the red devil. What did you find out at your appointment today?
This office was very calm, right on time, newer, but smaller.....only one other person in the waiting room when I got there and there were only maybe 10 chairs total in the treatment room. Long drive for me however so I am only going to go there if I can't get something at the other office the co-incides with my work schedule. I saw some of my old nurses which was nice and the one ran over and said that they had been keeping her posted on my tumor makers and how it's just unbelievable. All I am hoping is that the price of SEs isn't too bad.... am really hoping the EF doesn't go down any more and that one day I get winded walking up the stairs and am unable to do things.
Oh, asked about scans also and we are going to try to get those maybe as early as next week, depending on what day I want. Am trying not to take off any extra days as I hope to take a big vacation in October.
Edited:....just read your post Nanium.....was writing when you posted. Will be praying for you on Friday when you get the MRI done....at least they aren't messing around and are getting you in. Chemo does change your vision you know....I was constantly getting new RXs and then ended up with cataracts which they blamed on the steroids.
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Lilylady,
I am officially jealous of you! My doctor is nothing like that. Wishing
Marybe, I'm so glad you got the chemo. Know it was a worry.
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Hi MaryBe-you got me giggling about 'advice' on line and on this site....sooo true...sometimes I wish our docs were as update on chit as we are...LOL.
Nam - eyesight...yes, mine went nutz. Had ck up scheduled, but canceled as knew chemo wud do bad things to my eyes. My insurance only covers 1 ck every 2 years so didn't wanna use it up for nothing. Did the recheck about 2 month ago...my eyes are back to where they were B4 chemo. So, new pair of glasses and I'm off. Worst part about it (not mentioning the migrains) but I cudn't read...and I LOVE to read. Now...at least a book per week. Not saying everyone will see improvement after chemo, but most do. Good luck!!
Lily - does he look like that guy, can't member his name...the hottie from Gray's Anatomy?? jes kidding....my onco female, but my cardio guy is like that...if I wasn't married...hmm hmm hmm....!!!!
Love, Prayers, and Healing Energy to all!!
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Picked up a RX for Cipro....the final culture is not back, but there were white cells in five of the preliminary tests so it is a definite infection. The pharmacist had to come out and tell me that there could be an interaction with my warfarin and I should be on the lookout for nose bleeds, etc. I told him I have my INR checked every week so we are on top of it.....actually I can't even remember what they told me it was yesterday, but I know it was in the range they want it to be. I also have a coagucheck here at home, but it's a PIA to use so I just have them do it at the onco's since I am there once a week.
I think it is perfectly normal to have a crush on your doctor....I actually have a crush on all of them....I think it has to do with respect. I was the same way in school, used to have crushes on all my teachers, at least the ones I liked....even the women I guess. I just thought they were IT. Face it, our doctors are keeping us alive so how can we not love them?
I think this bladder thing is partly in my head....not that I don't have an actual infection....but when I go in the bathroom, all I have to do is see the toilet and if I don't get going fast and get my pants down and seated, I am in big trouble....it's like a Pavlovian response. They told me to drink lots of water also.
Tonight I am supposed to start the coreg again....just one at lst and then we will see if we can build back up to two a day.
My BP is pretty normal today, at least for me....108/ 68. So we will see what happens.
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7 hrs in the chair today for the first tx of perjeta/herceptin/taxotere. NP said fight for approval is getting very ugly. She went for an informational meeting last week put on by the drug co and when she asked about treating 3rd line chemo patient he shut her right down. he spouted the line about FDA approval being only for first line patients. She said a whole group of them went ballistic on him because they are not helping the docs get the off-lable approval. he told them tjere are trials starting up for advanced patients but I am not eligble because the placebo drugs are ones I have already failed on.
I hope today wasn't both the first and last tx for me. If approval doesn;t come thru in the next 3 weeks it will be Navelbine for me. I am going to ask if we could do the taxotere and herceptin if that happens.
Marybe I am glad you got your tx. My blood pressure is naturally low. I am usually 90 or 100 over 50. The nurse asked today why I didn;t have a current echo or Muga and when I told her about what the doc said she said she still had to check it out because both the herceptin and perjeta are ejection fraction problems. I was 60% in Jan when last checked and was 85% when I started.
Nanium-I amglad you are getting the scan on Fri-as bad as I dread the results part I always fall on the part I would rather know then not know.
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Hi all,
I posted late last night and it disappeared off the face of the earth. Marybe, glad you got your chemo. Yeah! Weird that you blood pressure is up and down like that. Lily, 7 hours .... holy crap. That's like, forever! Sure hope you get approval for further treatments. It's not fair that you have to fight so hard for the treatment your onc recommends. Soleil, I mentioned in my "out in space" post that one of my good friends from college lives in Wisconsin, Green Spring or something like that. She used to work in Madison. I have visited and sure hope to get back there. Wisconsin is a beautiful state.
Scan on Thursday and appointment afterwards for results.
Hope everyone has mild SE's ....0 -
Wow, LL....85....when I started I was at 70...then 60 and this last echo 45-50. The cardiologist told me she has seen the ejection fraction go up on people who did herceptin after they went off of it, but not on adriamycin....she also told me that in the patients she has seen who had a drop in the EF it had been years, as many as 10 post Adriamycin, never as early on as mine so that is when she said she would call mine accute. I have been reading about cardiomyopathy and must say it has me worried, but I don't feel bad, don't feel any different in fact. My BP has always been on the low side also, but when I was that 79/49 on Sunday, that scared me. Will see if the coreg I took tonight makes it drop again. I am actually thinking the crawling skin feeling was the red devil, since I was feeling that way this AM and had my treatment yesterday and had been completely off the lisinopril and coreg. Am wondering if I had built up a tolerance for it, was no longer having red man syndrome.....but did last week, had the redness again and that was the same day my skin was crawling...1 day post chemo. Who knows....we all react so differently, it's hard to say what's a SE and what isn't any more. All I know is I keep adding to the pills I take and hope I never end up with one of those huge pill boxes that are divided into fours for a days worth of pills like my Uncle Bill has.
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I feel like I have a pharmacy and I am close, Marybe, to having one of those pill boxes with meds all organized. Think chemo brain has kicked in as I have to stop and think if I have taken the medicine. However, I am taking Protonix for tummy issues, Vitamin D weekly because of very low levels, potassium as mine was low and requiring potassium, BP med - and the pain meds, nausea meds and Ativan. There are just lots of bottles; I feel like a druggie and some of these babies are not cheap ! I'll let you know when I get that pill organizer !!
Yes, I remember my eyes getting blurry when I was on chemo before - between chemo brain not letting me remember what I had just read on a page when on AC and the blurred vision - couldn't read. I still read - when I say vision problems, it isn't just blurred vision. I'm getting visual disturbances and both eyes aren't working together to focus - not quite two of my husband on Saturday but bigger than just one. I had my glasses changed just prior to finding my mets and know that it doesn't do any good to have them checked when on chemo as they eventually clear. Just didn't want to mislead you and think that all I am having is some blurred vision. I still don't think it is anything brain wise - I have extensive spinal mets and am wondering if one in my neck is now perhaps causing pressure on a nerve creating some of these problems. After the brain MRI is ok, we do the regular scans in 3 weeks and should be able to see if there is a problem perhaps in the neck with a nerve.
I was STRESSED Monday and when they did my BP it was 139/85. I've had it up to 158/89 before - they didn't panic to much. It is always worse when I see the oncologist. My BP has always been pretty normal. Marybe, you must be a tiny lady that runs a low BP. I kind of cringe when BP and cholesterol starts to change, anymore it scares me to think there might be more pills in my future. I'm not a spring chicken so drugs are always talked about and just brings that pill organizer closer.
Marybe, I started AC treatments 7 years ago starting in October, but she was talking about 10 years. I was tested within that first year because I had some complaints of sortness of breath. (I had horrible fatigue. I had been on estrogen for 30 years, stopped cold turkey and had gone through chemo and radiation and it took me a long time to recover from fatigue.) It was ok at the time. It has never been suggested that any of that be repeated at anytime in the future. Has made me really wonder how many women that have received Adriamycin in the past is actually being monitored to see if they have developed a problem. I'm glad that you are reading and making yourself aware of cardiomyopathy dangers.
Lily,need you to educate me. I haven't been at this metastatic journey very long. Explain to me what is a 3rd line chemo patient? Is one of the drugs a clinical trial drug or one that hasn't been approved for BC? Is it a new drug that is limited in supply and they handle who gets it? I honestly don't know what that is.
I've taken my meds and it is time to say goodnight. Doesn't work to try to talk and ask questions when the meds start to kick in. Got a wee bit of a lecture yesterday about taking the strong pain meds as prescribed, not just when I feel I need them as they need to be in my system all the time. I'm trying. That for me has been a bit hard to get through my head - have always taken pain meds when I hurt. I'm learning
Nite everyone - hope you have a very restful night.
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Naniam,
I just had a thought. I have something called Horner's syndrome due to the lung mets. The cancer is pressing on an optic nerve and it causes my eye to droop and affects my peripheral vision. The onc showed me where the optic nerve is and i couldn't believe it's near the spine and next to my lung. Maybe you have something pressing against an optic nerve that could be causing some of your vision problems?? So, you have been stage IV for 7 years? Wow! That sure gives me some hope. You and Marybe are long timers!!
I've already got the pill box. Not that there are so many pills, but that I can never remember if I took them or not!!
Have a great day everyone!0 -
Hi everyone havn't been on in a while doing a teen music camp right now. called the nurse who gives me my herceptin to tell her i'd be in late tomorrow and asked about an echo since this will be my first 3 week does she was surprised that i hadn't had one in 9 months so then had to call oncs office and have one scheduled i feel like i'm being a bother i know i'm not just feels that way. feed back now i'm nervous about what it will show ok i know stay in the moment some times i get so sck og my cliche's that i say to myself
love and blessings to all
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Hello Susie MTN,
How are you doing on Tykerb? Are you taking it at night or in the am?
I'm on my fourth day, taking it in the morning when I wake up, and so far no side effects. Of course, it's only the first week. How is it doing by you?
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Glenna, I didn't write that correctly last night - It will be 7 years Aug 18th since my original BC diagnosis. Only learned I had mets in October last year.
Marybe had mentioned they were watching and checking women to see if they were having problems years out with their hearts from the AC - but it was never mentioned to me that we would check my heart at a future date.
Sorry that my post got a bit confusing . I will be getting my regular "measurement of success" scans in about three weeks. I think my problem is coming from mets pressing on a nerve, thought maybe the neck. Something like that would show up in those scans. I'll keep it in the back of my mind. Thank you for sharing that - never heard of it.
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I had adriamycin in 1987-88 and no one ever mentioned checking my heart though they did tell me at the time that heart issues could be a SE. Now on Doxil so they did do an echo before I started that and everything was fine. I guess I should ask my "number" so I'll know what to compare it to in the future. Naniam, I probably just read your post wrong. Later on in your post you mentioned that you were new to the mets game so I should've picked up on that. It's okay, we still have our long-timer Marybe to give us all hope!
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