Starting Chemo in Nov. 2011...anyone else?
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Thanks Doxie for your input. I have such doubt in my abilities these days. I feel I have lost my old self and I am just going through the motions. I am so afraid of the fatigue and of not feeling good that I am afraid to leave the couch. My anxiety level is so high all the time. I just wonder if I will ever feel human again.
GrandmaV- hang in there!!!
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Kelley-- I am a survivor -- of non-Hodgkins lymphoma. I was told I had 6 months to live--that was 1987. I can be very confident to say you will feel normal ...human ...again!!! YOU WILL! You will come out of this with a new definite of life and a new perspective-- all for the better. Honey, just allow yourself-- to feel what you feel, to cry when you want, to scream, to laugh...to laugh when you want. new insights will come every day and life will be good, even in the now! Big hugs!
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Thanks Quaatsi- no amount of support seems enough right now..I have 2 DD taxol tx left and I dont know how I will get through the next few weeks. The fatigue is unreal, I cant find my smile or my positive attitude..they have just dissappeared.
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Kelly, I know how you feel. This "journey" is a lot different then I thought it would be. I didn't realize the emotional toll it would take. I thought I was prepared for any contingency, then someone threw in some new contingencies. You told me to "Hang in there!". I will if you will. Do we have a deal?
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Yes GrandmaV..we have a deal. Thank you so much for the support. I feel that anxiety has taken control of my life. I'm not even sure what I am capable of anymore
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How I wish we could all be together for one weekend. Wouldn't that be fun? Thanks to all of you, I really think I can make it. I have gained about 30 pounds and really don't like to go out in public. I can't stand to look at myself or see how others look at me but I woke up this morning with the thought that I can do this. I really think I can do this. It is a first for me. I have 3 Taxol treatments left. I have finished 4 A/C and one Taxol. I really, really think I can do this. My thumbnails are flaking at the bed and my fingers feel numb. I don't want to take any more pills unless it is a vitamin. I am goiing to start walking when I can and going to work when I feel like it. I don't want to go back to my old ways. I do want to laugh and laugh and dance. I can't dance but maybe I can learn. Did I mention I want to laugh? I haven't cried all weekend. Wow, what a feeling.
Let's laugh and dance and laugh during our good moments. I feel as if each of you are my friends so hugs to all of you. Have a great week. I have a treatment on Tuesday so I am going to enjoy my good day.I hope each of you enjoy your good days too!
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Beth- of course you can do this! I know exactly how you feel. I feel like I have lost myself. I dont know where I went but I want me back. I never smile anymore. I cry all the time. I cant eat, I cant sleep. The anxiety is incredible..Im tired of taking a pill for everything. Everything about this sucks!
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Wow, this thread has been eye-opening. I have been so focused on surviving chemo, that I have not considered all the dangers of radiation. I had a mastectomy in Sept, but my tumor was very large (over 5cm) and my margins were not clear, so I have been told that I must do radiation. Strangely, from the beginning, I really felt strongly that I did not want to do rads, primarily because it took my simple implant reconstruction option away and now I have to do the much more complex tram flap surgery.
I am supposed to do 25 rads treatments beginning around March 20th, one month after completing 6 rounds of TAC chemo. I've already been told that they will be radiating a particularly large area because of the size of my tumor. Please tell me what questions to ask my RO when I go in to meet with him next month. Also, my PS put in a tissue expander at the time of my surgery. I was told this would be unaffected by radiation (which I had trouble believing)...what is the truth??
HELP!!
Thank you
Sandy
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I would ask what the difference in survival rates with rads and without is. I've read mutliple times that the difference with rads is pretty dramatic in other words good, but I have lymph node involvement, so I'm going for the most aggressive tx possible.
I was told I had to wait 6 months after rads for surgery to let the skin heal because of failure rate of recon due to rads, also. By a rad onc. at MD Anderson.
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Thanks Claire,
At some point throughout this journey I was given my survival rate %'s and I do remember that both chemo and rads added a lot for me. I pretty much resigned to the fact that I have to do it, but I was not aware of all the possible dangers, such as what I've read here about lung damage. I had a good sized tumor, so I know they will be radiating a large area.
I don't know if I will have to wait the 6 months for reconstructive surgery since they will be cutting away all the radiated skin and replacing it with skin/tissue from my abdomen. Geez, it is so crazy that I'm even saying these things. Less than 6 months ago I was a normal person. Cancer up-ends your life so completely.
I didn't have node involvement, but my margins weren't clear so I, too, am going as aggresive as possible.
Keep the faith,
SAN
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Beth - I am glad you are feeling better. I know it is hard to stay "up" all the time and that it certainly takes effort, more sometimes than we have. Good luck with your treatment tomorrow.
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Thanks, I was awake most of the night with stomach pain. If I eat anything past 1 in the afternoon, my stomach swells and I am miserable all night. I get so bloated. Has anyone else had this problem? Today I have had a cup of oatmeal with prunes for breakfast and 2 cups of cheerios with a banana for lunch. I have been drinking iced tea and water for most of the day. I was so upbeat yesterday and those feelings come and go. I am tired and my belly doesn't hurt tonight. Anyone else having problems with bloating?
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OH YES!! Beth!! I think what you describe is what happened to me for some time. But I would wake up almost choking and then, vomiting. My throat would then be inflammed and would hurt quite a bit the next day. Does this at all sound familiar? I can tell you what I did--
i didn't eat those cheerios nor oatmeal nor any carbs past whatever hour-- meaning about 4-5 hours before I went to bed. I would eat light; I would eat protein and veges or fruit and maybe calorie dense food that wasn't much in terms of volume. I could explain why one would need this but nonetheless, it does work and you can eat healthy food. Which btw, is lots of protein and vegetables for chemo anguished body! Q
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Beth,
I have had that bloaty stomach thing since chemo began. I have pretty much had one stomach problem or another since day one. It is very hard to maintain a sunny disposition when your stomach is always hurting, churning, bloating, or whatever.
I think I'll try some of Quaatsi's suggestions! 0 -
Sandyland--I'm right there with you. Dangers of everything we are doing to knock this out. Is it worth the risk? Yes, but that doesn't make the dangers feel any less threatening.
I think exactly like you--6 months ago my life was normal, I liked my life--now I worry that I will never be the same person I was before all this--and I really kind of liked myself before all this. Will I become this fearful hypochondriac that jumps over every ache and pain, cough, scratch, etc? I was NEVER that kind of person before. Will I be this sad, cautious, anxious person the rest of my life?
Anyway. T #5 tomorrow. This tx regime feels like I'm running a marathon but the finish line keeps moving around the corner where I can't see it....exhausting.
Claire
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I just got off the phone with my insurance and found out I can get a second opinion on the radiation and if they tell me same thing I can go ahead with a mastectomy if I decide to. First good news I've gotten in a long time. It feels good to know I have options.
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Grandma - -Great news!
I am thrilled to be done with taxol, sort of one step down on this road. MX scheduled for Feb. I am hoping that some of the SEs,even tho they have not been siginificant,will begin to go away. We will see. On a lighter note,I got a hair cut yesterday. Even with the taxol,I did not loose all my hair. My 1/4 inch cut had grown to about a 1/2 inch and was looking pretty straggly. I am going to loose my hair again witht he next round of chemo, so I figured no sense in letting it grow in. Soback tot he 1/4 cut,which I just wear to work and everywhere. Atleast it looks neater.
I am back at MO on Friday for echo to follow up re: herceptin,talk about next steps and hopefully if all is well have a herceptin treatment.
Gentle week to all
Nel
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Good for you Nel! And GrandmaV-- wonderful.
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Grandma V ~ I am thrilled for your good news! Funny what passes for good news now-a-days...who would've thought that approval for a mastectomy would make us so happy
Having options is such a good thing. Much of what has frustrated me through this process is feeling such a lack of control over my own life. I'm glad you are getting some control back and that you have choices.Claire ~ I've thought the same way about every little thing becoming a "scare" in my own mind. I recently realized that after my mastectomy (4 months ago) I avoid touching my right breast at all. I don't do self exams or anything. It's as if I live in mortal fear of finding another tumor, which then made me second guess my decision not to do a double mast. I had to make a conscious choice to NOT be afraid. I just can't live my life that way. I am disciplining my mind not to dwell on all the negative possibilities. I am also having to balance that with not ignoring valid warning signs that something should be checked out. I certainly don't have anything figured out yet, but I know I cannot live my life in fear, so this is the best I can do right now. Good luck on #5 tomorrow, I hope it goes smoothly and your SE's are minimal. I love your description of the race where someone keeps moving the finish line....that is EXACTLY how I feel! I'm glad I found this forum. It is helpful to realize I am part of a community of such amazing women
Sandy0 -
Sandy...again we are so alike. I don't do BSEs anymore either. Not that I'm gambling with anything--my onc. examines them every week...but I'm afraid of doing it and finding something. I suppose I should--not be afraid of my own body--but I feel like it turned on me since I was supposedly doing everything I could to prevent this....low fat, plant based diet, exercise and lots of it, lean build, etc etc, regular mammos that came back clear...you know.
No. We can't live in fear, but all our lives have changed and that is something that will always affect us to some degree. As Qaatsi said we grieve for what was and for what will never be again.
Claire
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Grandma-Yeah for the good news from the insurance company. It is hard to get a straight answer from most of them before a procedure, so I am really glad the person you talked to was so forthcoming to you. I know that makes you feel better, just knowing that you do still have some control over things.
Beth-I don't really know what to call the stomach problems I have had. For the first few days after chemo, I have terrible constipation, take laxatives, then finally get rid of all that is inside me, making me lose between 5-7 pounds on the scale. Also those first few days, when everything taste terrible, it is really hard for me to eat anything. It feels like a chore to eat; it actually wears me out. I am always hungry, regardless of what I have eaten. Nothing satisfies me because everything tastes so bad. I think once I start to get some taste back, then I start eating everything I can find, trying to "taste" something again. Every time I mention any of this to my onc, she always ask about nausea. It isn't nausea; it is just that there are some stomack issues, which hurt and cause me to lose, then gain a lot of weight.
Everyone-I am so happy that this Friday is my last taxotere/cytoxin. I am going out with my family on Wednesday night to my favorite Mexican restaurant to celebrate the end of chemo. My married daughters wanted to get me one of those chocolate chip cookie cakes, and I told them that if they did, to get it for me before the last treatement, while I could actually eat and enjoy it. I was afraid I shouldn't have too much on my stomach when I had the treatment on Friday, so that was how we chose Wednesday for the celebration. I have had so many issues with the other treatments, I am not looking forward to this one in a lot of ways, but I can't overlook that it is the last one. It will be on to radiation in about 3-4 weeks after this last treatment.
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Bahamamom, I have almost the exact same stomach issues that you described. It is a weird and constant battle between being completely ravenous (from steroids) and completely unsatisfied due to that empty feeling (whether I've eaten or not) and the lack of taste in any foods.
My Onc also doesn't seem to understand. At my last chemo (round 4 of TAC) she wanted to prescribe a third anti-nausea med. I was like...I only take one of the two I already have! This isn't about nausea. Oh well, I've resigned myself to the fact that my doctors will never really "get" what I'm saying, the way that you ladies do.
Thank God for all of you and this forum.
Sandy
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Bahamamom and Sandy - I am crashing from the December group but you have described me to a "T"! I have terrible constipation for the first few days, tried to get ahead with Metamucil this time to no avail. I feel bloated and disgusting. Then things get moving and I feel like I could eat anything that isn't tied down, if only it tasted like food! I struggle the most with this, finding something to force myself to eat. And you are right, it's not nausea. I want to eat but it is difficult. Feeling your pain.
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Hi everyone, I will be starting FAC in a few weeks. Right now I get Zofran as an anti-nausea medicine with my Taxol treatment. That will change to Aloxi with the FAC.
Do any of you get Aloxi with your A/C? My problem with Zofran is very annoying and painful constipation if I don't constantly stay ahead of it. And sometimes I can't stay ahead of it. Does the Aloxi affect you the same way?
Thanks!
Phyllis
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I am gonna step out on a limb here-- constipation!!! I know Phyllis, I am not directly answering your question but here is something I have found very helpful for constipation- not just for me but for a few other people as well. It's a chinese formula from the company called Health Concerns and it is called Aloe22. (it is a replacement for Aquilaria22). You can google it and I think Amazon sells it. I will tell you to stick to the dosage-- 9 tabs per day! (more or less not beneficial). Bottle will last 10 days so not real cheap but it is the only thing I have found that produces a healthy response (did I put that gently enough????LOL)
btw, I am in no way benefitting from this (I see this kind of comment and trouble on another forum so I don't want any to think otherwise). I use it myself. Now, occasionally, I might add a wee bit of magnesium if I find that for a few days things are ummm, hard, shall we say? Q
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Phyllis-- I have had only fleeting nausea with my Taxol. One thing that my Onc feels really works (and I agree) is ativan which I get with my IV. Not sure when you need to use something but maybe if during infusion, you could try that. makes you sleepy but not constipated. Q
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Quaatsi ~ I wish I had gotten this info sooner! I have my 5th (of 6) TAC infusion on Monday and the "stomach issues" have been unbearable. I will try ordering the stuff you suggested online. It seems many of us have the same ravenous food needs, but the sad let-down of tasteless food.
Kelly ~ Welcome! Happy to have you crash us
Has anyone else had weird cravings through chemo? I've never been a foodie and, other than when I was pregnant, I've never been one to have cravings. NOW...I get ridiculous cravings for random things and become singularly focused (at times almost obsessive) about getting that food! My poor husband (the greatest guy in the world) always accommodates me, but I'm pretty sure he thinks I've lost my mind at times.
Sandy
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sandy, i craved wierd things, too ... and they were always in the potato family ... french fries, baked potatoes, and especially mashed potatoes. since my last chemo in november, i can't stand the sight of anything potato!0
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Quaatsi, constipation!! Healthy response....I can only vaguely remember what that is like! I'll check it out and probably order up. I gotta say that the onc's suggestion of 3 Senecot S and prune juice after every meal produces a response, alright, but not what I would call "a healthy response"!
Sandyland, I agree completely, however it doesn't fit the "appetite" or "nausea" checkboxes on the form! I've tried to explain but got the same response you did. My craving of the day is brownies with double walnuts. I NEVER eat brownies. Oh and I don't have a DH to go search for them, dammit! The craving may have to wait until tomorrow morning when the bakery down the street opens.
Phyllis0 -
Hello all. I read the last couple of days' comments and am right there with so many of you. Had my last A/C yesterday and am beginning to crash from the steroids. It's been a rough day more emotionally than anything...waiting for the nausea to kick in tomorrow. Hearing everyone, I want to encourage everyone - including myself - that we are all entitled to cry, each situation is so unique, and we are kicking cancer in the butt! When I do struggle, I realize all the crap that is circulating through my body, knowing this is not 'normal' me and keep in mind that this will be over. I know, grandmav, that your situation is uncertain in terms of going away, but I pray that it lessens and you will wake up one day with a clear head. What a day that will be! Persevere to find the right doctor for your treatment and questions. It is SO worth it!
On the upside, the cream for my port worked very well and the nurse that put it in was great. I didn't feel a thing and am so thankful.
I have had nothing but loose bowels since the beginning and while it is annoying, I would rather deal with that than constipation. Been there, done that often in normal lilfe, and I feel for each of you struggling with it! The loose bowels does wreak havoc on my hemmorrhoids which need constant attention, but I can deal with that.
I haven't had any ravenous days. I am diabetic and my sugars are so screwed up through this that I have to be very careful. When I am hungry, I don't want salad and veggies...makes me gag. Protein is good and I eat veggies when I can. And I have to limit my breads/carbs. It's all okay but just another high-maintenance deal like we all have in different ways.
There are so many factors we are all dealing with, that I don't think any of us should be giving ourselves a hard time about how different we are right now. The whole cancer thing is enough to wrap our heads around...then all the stuff running through our bodies...unknowns...hang in there everyone and keep venting!
Now, I get to go take an Ativan to try to sleep...at least for a few hours...such a rollercoaster, isn't it?
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