August 2010...anyone starting chemo besides me?!
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rachel & omaz -- I haven't had the stomach bloat so much, but my ankles and feet are swollen. It happened the day after my last TCH, lasted a few days, and then came back last week (2 weeks after tx). My ankles and feet are swollen and uncomfortable. The NP told me to drink a lot of water and keep my feet up (above my head). When I do this it helps, but as soon as I get up and walk around again, they blow up again. I'm going to call and ask them for a diuretic, I think.
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Good evening chemosabes and radicals-
Adey- nice of you to come back and see me, TAC sister! Yes, the pit this week. Geez, Louise, thank God we only have 1 left! I can't wait.
Elizabeth Edwards: even though the news is not good, I read on ABC.com they are going to try different chemos on her and some more modern treatments. She has had an awful past few years. Her doctors feel she can still live a number of years. I wish her the best.
Swelling: I have GAINED 5 lbs since I started chemo and my face is definitely swollen. I think the steroids help that. Now when I eat salad, which I love and that which helps water LEAVE my body, it is upsetting my digestive path. There are new treats just around the corner every day!
Living on the edge! I am going to have TACOS tonight!!!!!!!!!!! WHOO HOO! Surely I will pay for this but I don't care...if Keith Richards can live on whiskey and heroine, I can survive tacos and chemo! Poor Keith...he repeatedly used as an example of debauchery and hard, hard living by me! Oh well...he is, after all, a fine example of such!
Natural diuretic: Granny smith apples and coffee.....this will clean you out!
HLN: I need to stop watching. I can't hear anything more about parents killing their kids AND that poor, poor Zahra Baker who had cancer and a prosthetic leg, as it turns out, she was raped by her cousins or uncles, killed and dismembered and her bones were scattered around the county. This is the worst thing I have ever heard. Also her wicked stepmother received 10K in funds, for what appears to be no reason, from some mysterious source in the UK. It is being intimated there was a recording of the rape(s) for this source. This is beyond disgusting.
IowaSue: that sounds like a palatial indoor pool setting! Good for you...that is a nice way to handle Iowa winters!
Well, one of my Irish stocks went up 60% today
This makes me very happy! Back to doing comprehensive scans for viruses and cleaning the cache on my computer! A 3 hour job but I am HIGH ON STEROIDS so I am doing laundry and cooking dinner at the same time!!!!!!
Have a good night all-
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I have my initial appt with the Radiation Oncologist for January 4, I hope I feel better by then.
I lost some 17 pounds during chemo. The tests I had last week showed that I don't have congestive heart failure. One of the symptoms for that is swollen ankles, I don't have them. I always feel some concern about that because my Grandma died from congestive heart failure.
I think I feel a little better today. It seems like each day it is a little bit of improvement.
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Hello everyone. I had my last chemo, TCH, last Monday and expected to tough it out but then finally start feeling good for good, but it did not go that way. Instead I have had more nausea than ever. And my port access began to get sore. By Sunday I hadn't ate in two days, and I had a hugh angry red welp over the port. I went to ER, and got a bag of antibiotics, and fluids. My ONC wanted to see me today, and I got another bad of antibiotics and fluids there. I also had my next to last Herceptin. They are taking my port out tomorrow. My poor left arm looks horrible with all the attempts to find a vein, which has been one of the worst aspects of this whole experience. The port is infected, and I have cellulitis. I am taking oral antibiotics but they hope to get a good culture off the port and assure I am taking the best antibiotic for it. I am so frustrated though. Why now?? why now? I must return to work tomorrow or I am fired.....so I am working before I go in the hospital and hope that I can finsh out my hours late in the evening...I only have one more Herceptin after this, then a six week "wash out" period, then my long term meds which are both oral......I just needed time to get over this chemo but it all went so bad, so quickly. Please pray and think positive thoughts for me tomorrow. I just need to get back to work so I don't loose my job......
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Gingerbrew: I am so sorry to hear about the congestive heart failure but as you move past chemo I think that should subside. Consequently, a lot of people have it and I don't believe it is life-ending for the bulk of them. My mother has had it for over 10 years and she is fine. I wish you the best. I hope you get some strength back. If you can, allow 4-6 weeks between chemo and rads so you can build up some strength again. I have not found very many people, unfortunately, who are not fatigued from rads so some time in between might help you get better.
DebJ: Best of luck tomorrow. Sorry about your arm. I had that where they stabbed me several times in one arm searching for a vein when the port was uncooperative. Don't forget to drink a lot of water as they say not drinking plenty of...you guessed it...water(!) makes veins hard to find. I am sorry you are having a hard time but at least it is over. I will be sending you positive thoughts. Let us know how it goes.
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Lizzymack, I do not have congestive heart failure. My Grandma died from it so I was worried and then relieved when I was told I do not have it. Good news, very good news.
You are correct, I was actually told not to begin Rads right away so I don't have my preliminary meeting with the Radiation Oncologist until January 4th, then plans will be made after that. I really need to improve physically before then. Thanks for replying so regularly. I missed so many days of reading that I got behind. Where is Texas Rose?
Laters Ginger
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Ginger - If I remember right Texas is moving to her new apaartment and getting her internet service hooked up.0
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The stand fan with the remote control that Sohard and LadyinBama recommended is really helpful for the night time hot flashes. I put it at the end of the bed and turn it on after I kick off the covers. Cools me down pretty fast. I can tell when a flash is just about to come on, I think to myself 'if I lay here real still and relax maybe it won't start'. Nope, doesn't make a difference, it just comes on. I have one, cool down, get comfortable with my covers and many pillows, then that feeling and hello, another one! Argh.0
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Iago: I had gained 5 pounds in 2 weeks since my last onc. visit. Argh! But I haven't been walking much. I've got to get back to exercising regularly.
On bloat: I'm not sure if I'm bloated or not. I tend to gain weight in my middle and I've put on about 20 pounds since diagnosis in May. So I look like I'm pregnant, and it seems worse in the past month since I started taxotere. But how do you know if it's bloat or if it's just fat??
Last chemo yesterday!! Hooray! No more onc visits until January. Gonna give cancer a Holiday till after the first of the year.
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PS on Elizabeth Edwards: Lizzy, they said on the Today Show this a.m. that they've advised no further treatments. In her liver, not much time, nothing more can be done. Her sorry ass cheating husband is with her (for the kids sake, yeah right). So it sounds really bad. I hate it for her, politics aside, the woman has been through so much.
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Hi all,
So I started Rads with a report for those just beginning and I'm going to finish Rads with a report too. Here it is.
It sucks.
The last week has been verrrrry tiring, lots of fatigue. Also I seemed to be doing fine on it throughout the first three weeks but the last 4 and a half killed me. My breast tissue turned sunburn red, then brown and crusty and is now almost black. Nipple is infected and under the breast???? Don't even get me started on how gross that is. I hope you're all going to have an easier time of this, they say rads is worsened by a low system due to chemo. I believe it now.
Like LadyinBama and few others, I too can't figure out if I've reallly gained weight or if it's water bloat. And trying to exercise everyday, just a little bit.
Am very, very sad for Elizabeth Edwards. I wish her rotten exhusband gets what's coming to him. Is that wrong???
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Ooops. I made it sound like I was on 7.5 weeks of rads. Nope just 4.5. It was the last 1.5 that was the worst. Sorry!
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Deb J: I am sending many good thoughts and prayers out there for you, I hope everything goes well today and you work the hours you need to work. It stinks to get this far and have something come up like that.
On RADS: Several of you have requested a report from RADS Land as you finish chemo, so I will give my experience. I have finished 24 of 35 rads sessions as of yesterday. I am getting radiation to the breast from two angles, to the supraclavicular area, and also to the axilla. So, from what I have read, I am pretty much getting the maximum amount of radiation. First off, I will say, it is nothing compared to chemo! That being said, however, I do not find it to be the "walk in the park" that I thought it was going to be.
Physically, at this point I have some areas that have gone beyond red to brown and purple, but no blisters yet. The supraclavicular area is the worst looking, but surprisingly it does not hurt. The area under my arm and under my breast hurt, but that was from the bra rubbing against them. Once I took Lizzy's advice and put a telfa pad over them to prevent contact with my bra, the discomfort lessened significantly. And again, those areas are just turning colors, no blisters. On fatigue, it is no worse than on chemo, although I do notice that it comes in waves. You will be fine and then all of a sudden you seriously can't walk anymore and need a nap.
Mentally, this for me is the battle. The radiation process and session is so clinical. Honestly you are laying there on the table, exposed, in a cold room while they measure and write on you with Sharpies (I threw out every Sharpie in my house last week....bad memories). The techs are really nice where I go, but their job requires total concentration to make sure you are positioned exactly right, so there is no small talk. All in all, I feel like a piece of clay on the table, being manipulated and molded, and then zapped! Very impersonal, which bothers me. Also, you have to go EVERY DAY! Which really gets in the way of your normal routine.
Overall, RADS is way better than chemo. But, be prepared, that it might not be as easy as everyone says it will be, mostly from a mental aspect. I just really hate being the clay on the table and being written on everyday! Most of the time I feel like I am not even a person there on that table, just a thing. Anyway, this is just my experience, like chemo everyone's experience is different..some better, some worse.
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Just read Sweeney's post...my RO told me that my skin would get worse after rads was finished, for up to two weeks, before it got better. I have a little over two more weeks to go before I finish treatments.
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I wish I could be a positive person and just be glad I get to stay home out of the horrific snow we're having and just deal with chemo SE's. I find myself obsessing over how I am am going to get back into the routine of having to go to work everyday. My hysterectomy has been pushed up 2 weeks to Jan. 11th and I am nervous about this as it doesn't give me a full 3 weeks after the last taxotere (dec 23) to recover however I do want to get this all over with as I am now on leave without pay. I should get a small disability check however. My DH says the onc clearly told me I wouldn't have to do rads and I think with the amount of lymph nodes removed I shouldn't need it either. Meeting with onc on the 16th and will get clarification. Meanwhile life goes on and we have to deal with plumbing problems in our retirement house! Sometimes it is all too much....... Just have to keep telling myself that bankruptcy is not as bad as a metastasis so get my priorities straight!
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Zenith- my heart goes out to you this morning. I hope something good happens to you today- something that makes the icky-ness feel less daunting.
SPTMM62- TOTALLY agree on every single point you make. I was depressed by rads, I thought it was going to be a walk in the park and it has turned out NOT to be. And the daily grind of the hospital is soul-sucking. I'll be thinking of you as you go through these last couple of weeks. And yes, I would agree with the RO that it does get worse in the two weeks following treatment. He said that had something to do with the cycle of skin regeneration. Makes sense I guess.
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Thanks guys for the information on rads. I am NOT looking forward to it--luckily, I live pretty close to the hospital but the thought of going everyday for who knows how long is really hard. Plus, I am worried about the skin. My RO keeps telling me how easy it will be--clearly he hasn't done it. I have heard the "walk in the park" so many times that I could scream.
I went back to hospital today for them to run tests on my "bloating". They did my bloodwork which they said was actually "stellar"--I have bounced back from last chemo (2 weeks ago) very well and all my levels are "normal" basically just like someone who hasn't even had chemo. So that was good news because if there is something serious with the bloating it would show in your kidney function numbers and liver function numbers. That being said---they checked my abdomen and they said that I am getting severe bloating which is a SE of the Taxotere--you know on the list when the writing gets small on the information--it said "severe bloating in 6%"--I guess that is me. They said they believe that I am at the worst and it will only get better--if it doesn't--then they will put me on diuretic and do a couple of scans to be sure--they don't want to give diuretic unless they have to because they have their own SE's that are pretty severe. Basically, I have to put up with looking like Violet from Willy Wonka--you know the blueberry girl---for a few weeks--I shall stay away from any pictures. I told my sister yesterday that my face looks like a Cabbage Patch Kid....lovely look
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Rachel- this is a horrible question to ask...but are you passing a lot of gas too? I was super bloaty and tooting all the time, it was reallly awful. It lasted for about 4 weeks after the last round of taxotere. I hope that gives some light at the end of the tunnel. The gas thing I just couldn't believe, it really wasn't my normall!!:)
Also HAIR- I had my last taxotere the second week of Oct and I now have a pixie cut! It's coming girls, hold on!!!:)
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sweeney I have the gas thing too! Poor dh, my sense of smell is so senitve so I would make a big deal if he passed gas and now I do it all the time! I was worried b/c they held the Taxol this week and it still happened so I thought great, it's the herceptin and I'll be tooting and taking immodium a few days a week for a year. So it's relief to see it lasted a few weeks for you and went away. Great about the hair too, I am so cold without it. I'm wearing two hats out today -it's really windy here. I've lost half my eyebrows and lashes (not to mention my boobs) and I'm a gasbag - no wonder I can't find my mojo:-)! I'm going to try to use it though so I don't lose it. Hope the tamoxifen isn't hard on that too! love the new pic.
Carolyn
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All: What was that site/link that was the treatment calculator? I think someone in our group posted it, but I didn't keep it. It's the site where you punch in all your stuff and they give you the official medical guidelines for treatment? Not the one that is the outcome calculator. Does anyone know what I'm talking about? I may have seen it somewhere else. A friend of mine wants to look at it.
thanks
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Ginger -I think texas was in the process of moving...hopefully we'll see her again soon!
Just returned from a visit to the oncologlist. I'm having the strangest symptoms. I thought I felt swelling through my chest and underarm - I was sure I had truncal lymphedema. But it's mostly in the morning. I'm confused --it feels fine now. I'm still thinking that there are swelling issues going on though. I saw the onc. on call - a very nice man. He felt and looked and said he didn't see anything, that it's probably just post surgical healing and weird sensations.
He did do a rib series of x-rays because of the rib pain I'm still having sometimes and the back of the shoulder pain, which is a whole other issue. It's very tender if I lean against it or someone touches it. He wants me to watch carefully for shingles on the skin and cellulitis. He also ordered an x-ray of that area.
SO I'm back in the waiting game. I'm terrified. I'm just really really scared.........x-ray results should be in tomorrow.
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Oh Cal, I'm so sorry you're back in the waiting game. Not sure if this is useful, but it's what's going through my mind so I'll spit it out there- 99% of these things are just simple issues that can be resolved. We just don't trust our own bodies yet. Fingers crossed and keep us up to date, but try to rest easy that it's NOTHING.
CKPTRY- I start Tamoxifen in the next two weeks. Urgh. Just getting rid of the farting and apparently it will start all over again!! But I will keep you updated on the SEs. Hopefully none. Mojo is a tough one. We're working on that right now- it's going surprisingly well. I only offer that much info b/c I think it's a big part of rebuilding life afterwards. But I must say, as the gas disappeared the whole thing got a little easier!;)
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thanks sweeney! Yes, it did come right after I went running about a week and a half ago. I just wish it would go away.....unsettling. At least I only have to wait a day or two for the results.
Meanwhile, my mole biopsies came back totally normal! Praising God right now for that! And clean margins so I don't need to go back in for any more removal. yay!
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calamtykel So glad to hear your mole biopsies came back normal! Yay! Hopefully your x-rays will be normal also. I have also read several places that what sweeney said is true - post BC we are all so attuned to our bodies that we notice every little ache and pain and 99% of those turn out to be absolutely nothing.
Thanks sweeney and sptmm62 for the reports on rads! It is good to get a little insight as to what that process will be like.
DebJ I'm sorry to hear you are having such problems with your port, SE's and then the stress of returning to work on top of it! I hope you are feeling better soon.
I'm still doing pretty well post-Abraxane, yesterday evening my legs got really achy but today they have been ok. I still have 3 more treatments to go but I am finally feeling like there is a light at the end of the tunnel.
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Rest in Peace Elizabeth Edwards. You taught me something good about cancer, that one can move through it with humour and grace. You were one of us and will be missed.0
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Sweeny, Did you use any sort of cream or oil and what kind? If you did use one or more, did any kind help? I am just getting to arrnaging where and what kind of Rads I will get. There is a new one where some tubes are inserted inside your breast under a local and you go twice a day for five days and then the tubes are removed on the last day. It isnt the same as the one where the tubes are inserted during your surgery for lumpectomy, this is for later on. I am considering this because I have extremely fair skin and burn very easily and am concerned with the effect the rads will have on my skin.
I hope you are healing well now.
GInger
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Ginger - that sounds interesting, is it a clinical trial? I was wondering if anyone had rads in the face down (prone) position (I think of it as the hanging boob position)? Anyone have their onc talk about that? Seems to me it might expose less of the underlying chest to scatter radiation.-?0
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SPTMM
Thanks for posting your RAD experience. It always helps me to know what is coming and you wrote about something I havent heard much about. Being mentally prepared will help me for sure because I am so accoustomed to lots of chit chat during chemo. Where I go there are many private rooms for chemo and it ius very personal. It sounds like RADS will be a big change for me. More like spending time with engineers rather than liberal arts majors. I hope that makes sense.
GInger
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Ginger: You hit the nail right on the head with your analogy! Regarding creams, I used only pure Aloe gel until the redness in the areas I mentioned became pronounced, then they had me use Aquaphor, but I only use it at night because it is really greasy.
Very sad to hear about Elizabeth Edwards. For some reason, its hitting home really hard. It was nice to read that with all she had been through, she ended her life showing grace and class by allowing her low-life cheating husband to be there with her and the kids at the end. It definitely was best for the kids, but I don't know if I could be that classy under those circumstances. I am sure she is now in heaven, at peace with her oldest son.
Hope everyone is feeling well this evening!
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