Taxotere, Carboplatin and Herceptin
Comments
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I saw some posts for Calcium/Vitamin D pills. I take it in in liquid form. Cal-Mag Fizz. It disolves in water and very tasty. I thought this might help those who have a problem choking back the pills.
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gramma - I want to know too. How do we know if it has come back. I asked my onc if I was going to get another PET scan and he said no. He said he won't scan me unless I have symptoms ??? Since mine was in 2 nodes, I am a bit concerned. I don't want to do this again.
Lisa
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Magnola - I would have been positively livid. You did the right thing. Pretty damned irresponsible to run short on meds.
Lisa
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Thanks for all of the great advice. I called the onc office and talked with his nurse about my swollen glands. She said that since I don't have a sore throat or fever, to just keep my appointments the same and when I go in to see him Monday before my chemo treatment, he will evaluate me then.
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Carolyn: I see my ONC in just a little while and I wonder the same thing. If they don't test you like scans and such how would they know. A question I am going to ask. They send you home and if you have a pain have it checked??? Only when I saw the lump did I go in and it was already in the Axillary Node. I didn't feel anything...I saw it and it was to late by that time.
I see the Dr. who was on the North Pole, or South Pole, I can't remember who got the dx and they sent her meds and she treated herself...do you remember her? Well she died this week. I guess the cancer came back in 2005.
Anxiously awaiting the ONC visit. Will report back what she says...
Maggie: The old saying the squeaky wheel gets the oil first...you sweaked or swalked and got their attention. I know someone that was more quiet was bumped and you got their 2:30.
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For sure I will ask my onc about the echo I was terrified to think my heart wasn't going to be checked again till I was done. Very interesting feedback on number of Herceptin treatments make a year, I am asking about that also, I see my onc this month seems like I havent seen him forever since rads I have lots to ask him. Well my burnt boob is almost healed
2 weeks and 1 day from last rad TX, Thank God !! Not as bad as it could have been,so I am very glad for that. My hair is filling in quite a bit not in front yet so still rocking my bandanas , My awesome hair gal got me a 3 step Nioxin treatment been using it faithfully dont know if its helping or my hair is just really coming back on its own Im going to keep using it till its gone Cant hurt
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I discussed the idea of reoccurrence with my oncodoc at our last visit. He said that statistically none of the tests have been proven to detect reoccurrence better than women's sense of their own bodies. He said that the tumor marker blood test (CA125, I think?) has too many false positives AND false negatives and in his words "Is not ready for prime time yet." He said that all the scans and tests in the world are not as reliable as a woman finding something or knowing that something is not right in her own body. Obviously we will get mammograms and breast checks, but other than that, they rely on us, it seems. I didn't follow up much on it with him, since I still have a long time until I have to deal with this issue, BUT I can see that it will be a very tricky line to balance on between following your instincts about your own body and not becoming obsessed and completely crazy over every tiny thing. I did find it interesting though, and it seems to go along with what other people's doctors say as well.
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Amy.........how is the Chillow???? Is it worth getting?
I am also worried about reoccurance, and I won't be getting mammograms anymore since I had a bilateral mastectomy, but what about elsewhere in the body.... I was told by the onc that we had one chance to cure it so we hit it hard the first time, if it comes back, we just go through more treatment to prolong our lives...................... So if it goes to our liver or bones or brain, by the time we have symptoms it is too late? If they don't scan you until you have symptoms, then, that is pretty depressing. we can't feel our internal organs like we can do breast exams, so now what???.
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The Last One Before the Last One!!!
Today I successfully completed Chemo #5. We call this "the last one before the last one." (swiped from my sister-survivor Amy).
What a feeling!
I haven't updated as much as I would like to because I really hit the "brick wall" people talk about after your 4th treatment.
My fatigue was OUTRAGEOUS! Not sleepy, just TIRED! I thought about all those times pre-cancer I would tell people I was "tired!" Not even CLOSE! It's a fatigue that is barely explainable, but I would have given up vital body parts for a day's worth of normal energy and a night's worth of uninterrupted sleep!
I'm swelling. I'm becoming that brown-bald-pufferfish I joked about at the beginning of this process! LOL!!! My ankles are "cankles" and I had the added joy of getting a slew of mosquito bites all over them after eating crabs outdoors at Stephie's. So my cankles are puffy and they itch! Lovely...
Lastly, I'm grappling with the phenomenon called "Chemo Brain." I am getting forgetful and it's hard to focus and concentrate. I have left the house without my wallet and lost the badge that gets me into my federal building. Just today, I left my Scrabble game in the back seat of the car of the lady who drove Me & Mom to the hospital, and then when coming home in Glenda's car, realized I had left my cell phone in the lobby of the hospital as we waited for them to bring her car around. We had to go back and get it, thankfully someone had turned it in!
My numbers were "ok" this time around. My HGB dropped to 30. Not at 24, and probably won't get there before my last chemo, so it's looking like I will skip the blood transfusion! YAY!!! And thanks for all the prayers!
However, I am still anemic, my body has decided it doesn't want to make many red-blood-cells anymore. It was so bad today that they nurses sent my blood down for more a more specific workup to determine if I needed an infusion of Venifer, and liquid form of iron, which would have constipated me horribly. Thankfully, the additional numbers came back within range, so even though my red blood cells are LOW, I am not in a zone where extra steps need to be taken! They will do this same more complex workup at my last chemo and decide then if I need the Venifer.
So my prayer requests over the next few weeks:
1. Mild, manageable side-effects from chemo and post-chemo drugs, as they have been
2. Reduced swelling
3. Increased energy and reduced (or at least manageable) fatigue
4. More GOOD sleep nights than BAD
5. The discipline to drink 2 liters of water daily
I'll end this with the words from the closing of Farrah's documentary.
Last but not least...the hardest question of all for me to answer
How are you?
Today, I've got cancer
But on the other hand, I'm alive!
So I guess I'm GREAT!
Yeah, right now, I'm GREAT!
My life goes on and so does my fight
And, oh, by the way
How are YOU?
What are YOU fighting for?
*****
Doing Great & Fighting for My Life!,
Alaina0 -
Wendy - the first night with the Chillow was pretty good. It will take some getting used to - so give me another day or two and I will report in more thoroughly. It definitely wasn't TERRIBLE, I'm just not sure how much help it is going to be. I'll write in more detail on Sunday or so.
Your product tester -
Amy
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Amy.... thank you. let me know, no hurry. But I am one to get headaches and the cold seems to help, so in the meantime I just use frozen water bottle in a sock at night ...to keep me cooler when I get a hot flash or if my head hurts... works for now.
Wendy
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Alaina, It does seem like you get more tired as it goes on but the light at the end of the tunnel is you get better after a while. You will not be instantly revived after you finish the chemo but you will have to work on it and time will help. I know when I went back to work In Jan after I finish TC in Nov. I was still pretty weak and now I am able to stand for most of 5 hours like I used to. Not in the beginning though. It was more sitting than standing but I worked up to it and necessity was part of it. I had to get going because we lost one of the employees to a better job. I am so happy for you to be finish with the next to the last. I hope you will breeze through #6 and then get most of your wish list. It will come but not all at once I am afraid. I would like to wake up some morning and feel 16 again. No wait I had a child at 16 so lets move it back to 14 again. I got to sleep more then.
Magnola,I had to have a shot last Herceptin and they did not have enough so they waited until I was almost finished with the treatment and when the person who was supposed to get it was not there yet I got it and they said they should have the med by the time this person showed up. I felt bad about taking med that was set aside for someone who was scheduled. I have been there for Herceptin and they did not have the meds yet and we waited for 3 hours before their shipment got there. Most were patient but some were angry because they had other plans.I guess they order fresh meds everyday for the ones they are expecting and none for surprises like my shot. Still I have been taking it off and on for a while now and they should have a backup just in case a person's blood count is low. I know it is expensive but my gosh it is a hospital not a doctors office. I am glad you made your thoughts known. Good for you!
Happy 4th everyone! I guess I am going to have company so I get to entertain which I really don't want to do but will.
Carolyn
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Rats I hate it when I write out and then try and post and it doesn't!
With this stupid chemo fade that still last lets hope I can remember half of what I wrote.
I was focusing on the subject many in here plus myself have been thinking and that is the test after all our treatments are over. I really liked the response from Amy's onc. That puts real light on what is the consensus of my onc. She said they did a study of women who had every test afterwords to women who only were treated when symptoms came up and found that the one with the test although may have found something a couple of months before ended up with the same results when treatment were over for the one's who just started treatment after symptoms. She also went on to say that all this radiation in our bodies can cause cancer and although they have to for treatment don't want to give us any unnecessary radiation just for a look.
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SHUT UP it did it again. Everytime you use the abc spell check it messes up and deletes the post....ah shucks!!! I just cannot do it again....
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FASCINATING, Cupcake! Thank you so much for posting! It really makes me feel better because my oncologist is one of the best in this area and she said no scans. I knew she had a good reason, I just didn't ask why. (LOVE the photo of your pooch, Cupcake!)
Has anyone had their Herceptin only tx delayed due to a drop in their MUGA? I was supposed to get my first Herceptin only yesterday and couldn't because my MUGA score went from 75 before chemo to 57 after. It was done on a different machine, which the tech said could make a difference. Now I have to see a cardiologist for a consultation. I'm bummed out.
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Denali,you are still in the good range but maybe because you fell so fast. I had to have a cardiologist do all the tests on me too so I wounder if that is what a lot of onc want to do just to make sure before they continue. anyway I never had to miss a tx. I even have my rbc still going down and they give me shot of Procrit and keeping on with the tx. July 8 is my last Honly and I will be so glad and I hoping this breathing problem clears up.
Carolyn
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Gramma23 - I don't know how others are able to keep their insurance without working. I can collect disability until Jan 2010 but it's only $275 per week. How is everyone else making it? I own my house and still cannot pay my bills. When I think of the junk mail I got for disability insurance that I tossed I can just kick myself. I'd be covered if I had an accident on the way to my appts, other than that nothing. It's been very humbling to visit the state office and fill out the forms for food stamps. With all the documents I need to show them, it's taken forever and they even consider my teenage daughter's wages from her part time job.
I think there should be some funds available from somewhere to help cancer (or other) patients with really low income. Hopefully I can work during chemo but if not I will be in serious financial crisis. Seems to me, as someone who has worked for 44 years, temporary funds should be available.
Is anyone aware of any aid for us? Would sure appreciate any help. Thanks to all
charm
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Charm,Have you tried "The American Cancer Society"? Look on line at their site or call. It is www.cancer.org phone is 1.800.227.2345. I am not sure if they can help or not but my insurance was through my husband's union or we could not have made it either. He had triple bypass just as I was finishing up my TC and the Herceptin is so expensive too.The Procrit shots I have to take for my red blood cells is $3000. for 4 shots if I buy them but I don't have enough drug insurance to pay for that so if they want me to keep taking them I will have to get them at the hospital when I go for blood tests. I hope you find an answer. You will have FLMA but it is not paid unless you have some disability through you job. Ask your Human Resource person at work what you have and FMLA does not have to be taken all at once so if you need just a week off here and there it may be an option. Keep trying! I know you don't feel like doing all this but it is one way to get help. I am so thankful to my job that they let me come back to work part time after being off 7 months. I did have to cash in my IRA but I am glad I had it. We paid some medical bills and lived off it and my husbands job until he had to be off too.He is retired and gets SS and a Pension from the Union but he was working part time too. I hope you can get some help!
Carolyn
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Charm, in my community there is a group called Pink Tie Friends. They offer financial support to un-insured breast cancer patients. Maybe your community has a similar organization. The American Cancer Society would be able to tell you. Good luck. Lisa
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I'd be upset too! I think that folks working in the medical community get numb to the suffering they see. They have to in order to do this work. But we are very tender and sore and terrified. Most of the people I have met have been kind and compassionate, but some are just technicians and cold as ice. We prepare ourselves emotionally and physically for these treatments. It isn't ok for them to capriciously change things because they failed to plan ahead. Besides--venting can feel really GOOD! I find it theraputic! I just try to not be too mean...LOL Good luck!
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To Magonlia: I'd be upset too! I think that folks working in the medical community get numb to the suffering they see. They have to in order to do this work. But we are very tender and sore and terrified. Most of the people I have met have been kind and compassionate, but some are just technicians and cold as ice. We prepare ourselves emotionally and physically for these treatments. It isn't ok for them to capriciously change things because they failed to plan ahead. Besides--venting can feel really GOOD! I find it theraputic! I just try to not be too mean...LOL Good luck!
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A question for Herceptin Only Ladies.
I have been Herceptin only since March 2009. I still get nose bleeds that have progressed to nasal infections. My nasal passages are very sore and bloody and I sneeze yellow gunk. with blood. Anyone else have this? It is getting very uncomfortable.
Lisa
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Ok ladies - as promised here is the Chillow review. (Note that I have no connection to this product - just found it online and thought it might help with night-time hot flashes which have been keeping me - and a lot of you - from getting a good night's sleep.)
It arrived on Thursday. It took the rest of the day to set it up - fill with water, let it absorb, squeeze out the air bubbles, etc. Very easy. I put it in a pillow case and lay it on top of my regular pillow.
Now it is a vinyl rectangle (sort of like a placemat size/shape) and has a foam pad inside which absorbs the water. It has a bit of a funny vinyl smell. It feels a little like sleeping with your head on a pool mat or something. I've slept on it for four nights now. It ISN'T perfect or a miracle solution by any means and has some down sides which I will explain later.
BUT - I have to say it does help. It is NOT COLD to the touch. It is only slightly colder that your body temperature, so when you lay your head against it, it is slightly cool. But it does somehow pull the heat out of your head into the water and regulate your body temperature. I DEFINITELY find my whole body is cooler and I am sleeping longer without waking up. I am not throwing the covers off (and putting them back on and taking them off again etc) nearly as often. Now I think that being bald may help it work better, as your scalp has direct contact with it, as opposed to having hair. I don't know. But I definitely do see an improvement in the quality of my sleep.
Now the downsides - it doesn't stay cool all night. I got the Chillow Plus which allows you to use both sides. So by 4am or so, if I wake up, there isn't a cool spot to move my head to, which I guess means my body heat has warmed up the entire side. So I do flip it over and use the other side at that point. But it definitely stays cooler longer than just a pillow. I don't find it ENJOYABLE - it isn't as comfortable as my regular pillow and I wouldn't say I LIKE IT particularly, but....it definitely is helping and I am glad I have it. It is sort of slippery even inside a pillow case. It costs $40 - I saw it on Amazon, but I think I got it from drugstore.com or some site like that. Shipping was free. It looks like something that should cost $12, but I guess they have a captive audience and can charge what they want. There are hundreds of reviews of it posted on Amazon if you want to read other people's opinions.
My bottom line is this: If $40 is a huge amount of money to you and would be a big sacrifice, I wouldn't buy it. If, on the other hand, you are willing to gamble $40 that it might help you somewhat and make you a bit more comfortable, then it is worth a try. I'm glad I have it, and it IS helping, but, as I said, it isn't a miracle cure or magic solution by any means. I guess I would grade it a "B."
I hope this helps someone!
Amy
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Hi Girls...I go in for my LASTchemo tomorrow morning and I cannot wait!! I am so anxious for the week to be over! Hopefully chemo is the hardest part of this. Then I will start rads in 4 weeks. When I had my first chemo-herceptin almost 4 months ago, I thought that would seem like an eternity, but it actually went by fast, thank goodness!0
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Amy. Thank you for such a thorough review of the Chillow, it is something to think about.
Christy.. Good luck tomorrow , I am right behind you for next Monday!!! Let me know how your week goes, yeah we are almost done with this part at least.
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Congrats Christy - that is great news!!! Can't wait to be in your shoes! I start on the 13th and can't wait to start counting them down. Will you continue with the herceptin? I did radiation 8 years ago and it was not difficult at all. Seems like most people are doing 4 rounds of TCH. Anybody else doing 6?
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Amy Thanks for the chillow review.
Christy and Cakelady - Congratulations. It is a wonderful feeling to be finished.
Backagain - I had 6 TCH tx's too. I was really annoyed that I had to have the extra 2.
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Backagain - I was also told 6 round of TCH and my onc said that was what was showing the best results. A full year of Herceptin after the 6 TX's. I had my first tx on the 29th and 2nd will be the 20th. No SE's except tiredness and slight nausea if I didn't keep eating every couple of hours. Nothing like other's have posted! Maybe I am just lucky but hopefully that will be your experience also!0
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Thanks everyone. I will heading out in 30 minutes for blood work first. I had a rough night last night and couldn't sleep. I finally fell asleep at 6:30 and then woke up to the alarm at 7;30. I think it was the steroids and night sweats and thinking abot this being my last chemo that kept me up. Hopefully I can sleep during chemo. They pump me up with double benadryl, so that should help.
Cakelady...Look at how cute you are in your new pic!! Did you finally bite the bullet and shave your head?? I will let you know how the week goes.
Lisa...Your new pic with your horse is is great!
Backagain...I am so sorry this is your second round with BC. This is a wonderful, informative and caring website and discussion boards. I am doing 6 rounds of THC, then my herceptin will continue the full year until March.
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BackAgain ~ I'm on the 6x TCH plan with H-only following through next April. Thankfully, gratefully, I just completed TCH #5 and am counting down the days to #6!!! My biggest SE so far (since #4) has been the fatigue/anemia. My red-blood-cells are struggling.
Alaina
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