March 2011 chemo-lounge
Comments
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Lily - one step closer....hang in there! I have been thinking of you all weekend and sending you healing wishes!
Annie
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Lily: Just wanted you to know I am thinking about you and praying all is benign. I know this has got to be so hard....HUGS!
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lilylady - Hang in there. I am so sorry you're dealing with all of this. It seems endless to get the answers you need to develop your firm plan of attack... The only consolation is that they are being thorough. Agree wholeheartedly re: the insurance companies -- ugh. On a lighter note, I have also been Spring cleaning the house and donating things to Goodwill. I want to simplify my life where I can...
bikenyc - sorry that you also will have to deal with thyroid cancer but am glad to hear that mdg has an example of it being dealt with and a non-issue basically for her Mom!
Best wishes to all those who have been struggling with SEs recently and to those of you who are heading to work on Monday. I agree with the comment (Kymn?) about not being able to track who has said what. I read things, find myself talking back to the monitor, and by the time I'm ready to type a response have completely lost track of all the specific comments I wanted to acknowledge and add to.
Michelle, your comments about the emotional rollercoaster and the connections and support on this board brought tears to my eyes. I totally relate to your comments.
I'm a bit nervous about my port procedure on Thurs and my 2nd AC treatment on Fri but I keep reminding myself of all the awesome women who have been through this and are now thriving. I keep saying to myself "I can do this!"
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cathyjoan - So glad you've found us here! You will find great support and insights. I am on a different protocol (AC every 3 weeks x 4 then Taxotere every 3 weeks x 4). I'm having my second treatment this coming Friday. With my first treatment, I felt cruddy/ fatigued for the first 5 days (including the day of treatment) then started to feel more like myself. Needed lots of naps though. Last week (chemo-free) I felt great and hoping the same until Friday's treatment. You WILL get through this and the beauty of this community is that you don't always have to be strong or fearless. Check in regularly -- you can get a level of support here that you may not be able to get from family and friends. Sending you a virtual hug!
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Also on day #4 and am hoping to go back to work tomorrow, but am wondering how my brain is going to function? I'm having a hard time focusing.
I also got a neulasta shot and am having some headache issues off and on.
My husband and I went on a 30 minute (!) walk this afternoon and I felt better afterward. I do think exercise helps to get things moving and clear the head.
It's encouraging to hear others say that from here on things should improve - thank you! This first treatment is surreal.
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Hey Timerdog - it's me, Souad (Arlene). I pmd you. Changed my name & pic a while back.0
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Lily - thinking of you, its good they are being thorough, but the waiting to find stuff out is hard.
cellomomof5 - I am having TAC and Neulasta and they said ibuprofen is fine - sometimes I wonder whether any of these guys agree on anything but I guess we just have to trust our own onc.
huskerkk - I found says 4-5 the worst, back at work on 6 but not sure whether it will get worse - #2 is on Friday and they say the Taxanes in particular are cummulative. They have shifted it from Thrs to Fri which is really annoying as it means I need an extra day off work and will be relatively well on the weekend when I don't have to work anyway.
supersally - with you on the fatigue thing - on day 5 I lay on the couch all day whinging and then was so tired at 8pm I went to bed. Managed to exercise every day though except 4 and 5. I don't normally do tired so it wasa bit of a shock that you really can't make yourself do anything.
Cathyjoan - welcome and good luck - you are already probably over the worst bit o f#1.
Had the head shaved Saturday (plus the husband had his done in sympathy) . We look like some sort of goblins out of Lord of the Rings. Wore a black beannie to the gym this morning and looked like a burglar.
Good news though is that this week I feel GOOD - so for everyone going through the first week - you will wake up after a few days and feel more normal. Itsn't it interesting how wonderful it feels not to feel yucky - never really appreciated it before.
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CelloMomof5-I am on AC also and had a headache every morning when I got up for at least half of the day for the first week after my treatment. It was horrible! I felt like my Tylenol wasn't working either. Good to know they told you what else you could take for it. I am going to mention it this week when I go in for chemo #2.
Lilylady-That's a lot to take in. How are you feeling? I'm thinking of you.
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Penny, my second treatment is moved to a Friday as well, because evidently he goes to a satellite office once a month. Maybe I should switch to Wed for that week, but have labs and support all arranged for FRiday, so guess I will just leave it. But will definitely rethink my days off from here on out.
Am maybe starting to feel a little better? Gonna try another walk and see what happens.
Best wishes to all of you toughing out the weekend...we're all in this together.
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MDG or anybody else-I went to the chemo shopping thread to make sure i had everything and I stumbled across a first posting by Laconianh27 who just had her first chemo and feels terrible-and says please help. I posted a reply directing her to us but she hasn't responded. Going to try a PM but since she is new maybe she won't know to look.
I am still not that great at this and wasn't sure how else to reach out to her. poor thing She doesn't know how close she is to people who will make her feel better. If anybody has any other ideas lets see if we can get her on board.
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Had my second EC (same as AC) this past Wednesday and I am so fatigued from entertaining my 6 year old all weekend! We're staying at my dad's because my husband has a severe head cold, and we thought it best to let him rest, and stay away from each other for a couple days. I can't tell if the fatigue is from running around with an active 6 year old, or the lingering effects of the chemo treatment. Probably both.
At least no Neulasta pain so far-
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Hi anniaed, I have to say size tumer you have and I refused chemo but mine was a grade 1 which I know do respond well to chemo. If I have been a grade 3 I would have done chemo. My path report also said no lymph vascular invasion Sowith all the side effect of chemo I thoughtt It wasn't nessary. My oncologist showed me the statistics and let me make up my own mind. How ever if tumor is more that 2cm they have to suggest it. Also if you go to a cancer center like I did chemo is a good money maker because the cancer centers get the drugs at a good price and charge the insurance double. Some patients really need chemo but it seem that they recommend it to most every one? Just saying.......Good luck with what ever you decide it was a very difficult decission for me.
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Hi sisters! I'd like to join the chemo lounge as well. I'm just thinking what was my favourite coctail...
my first chemo was on 16/3 (FEC), and I have 3 more turns. this chemo is maybe not so hard, like yours, I won't get taxan. I have a little nausea and subfebritlity, but that's all. If I didn't have the period now, I would be pretty good
I'm trying to be in a good mood, it's getting harder and harder...Icey - I'm nearly in the same situation as you, and I decided t have chemo, because I'm 35, I have micometastasis in 1 lymphnode. I decided that I need every 1 percent that may help to live longer, because that's my first goal, to live very long
and if the cancer comes back in a few years, which I hope will not happen, I want to say myself, that I've done everything. just saying.... it was a hard decision for me as well, and I wish both of us the best!0 -
LilyLady --- I tried to send this via PM but it wouldn't let me so I hope you all don't mind if I put this here.....
I read your reply regarding the liver/bone biopsy in the Stage IV forum and I wanted to PM you and tell you my story because I think you will find many similarities. On February 22, 2008, I was diagnosed with IDC and a lumpectomy was planned. They ran the normal CT and Bone scans which came back clear except for a nodule on my lung. They went ahead with the lumpectomy and I had four nodes positive too. I was HER+. My first oncologist wanted the lung nodule checked out before starting chemo. My surgeon said she was convinced it was focal scarring.. which indeed it was only focal scarring. However, very different from my CT /Bone Scar a few weeks back, the PET scan lite up light a Christmas tree with mets to my liver, bones, chest nodes. My oncologist said, "well this changes everything. we are only going for quality of life so on the positive side, your chemo will be easier to take". I walked out of that office and never looked back. I went for a liver biopsy and then to a new oncolgoist who said that they will treat my cancer exactly the same way as if it were a lower stage. She said we wouldn't have never known about the mets without the extra PET and she is convineced it still would have been treated effectively. She believes many early stage cancers are actually Stage IV but not caught. So, on May 1, 2008, I started 6 cycles of Taxotere, Carboplatin and Herceptin along with Zometa. After 3 cycles, she scanned me and I had a complete response to chemo. I was NED. We finished chemo and then it was time for radiation. The local group in Toledo, OH refused to give me radiation because of my stage. Undetered, my oncologist sent me to the University of Michigan and they immediately approved me. So I drove there every day for six weeks. Still NED, my oncologist put me on Tamoxifen even though I was only 5 percent ER positive and a year of Tykerb along with Herceptin. I had my last PET scan in November and am still NED coming up on three years in June. My latest 27/29 tumor markers are 17. I go see a naturalist as well and he said for the first time since 2008 he see absolutely no sign of cancer in my body.
So I just want to stress to you, to go for ALL The treatment you can. Don't let anyone dismiss you if your PET comes back positive. You will have four rough months on chemo but they are not solid rough months. There are good weeks in there too. But you can have a good quality of life. Being HER+, if you respond to Herceptin, you can achieve NED and have a good life. You need an oncologist that supports you in your treatment.
If I can help you in anyway, I would be so happy to do so. I had a mentor who had my diagnosis when I started and she was an angel to me helping me be an advocate for myself. I think had I stuck with that first smuck of an oncologist, I would not be here today. He told me no naturalist .. no supplements. My current oncologist is all good with my supplements.
Also, I will tell you I am a single mother of two daughters (who I have 24/7 = deadbeat dad). I work full time and I live on a small farm. During chemo I missed only a few days of work, took care of my daughters and our 35 animals. It is hard no doubt but doable!
Sending you best wishes!!
Jennifer
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Wow Jenn, you are another superwoman! Congrats on the NED, I'm just on my 4th day of 1st chemo infusion and feel so lazy and lethargic. I'm trying to get up and walk a few steps every hour. I'm so looking forward to being on the other side! Thanks for sharing your story!
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I have to echo what Michelle67 said, this is such an amazing source of support. All these books talk about having a connection with others to help in recovery, and I find that right here. It is so hard because it feels like you're going through this alone, but we're not!
cellomomof5 and colodisneylover: it sounds like that A/C is giving all of us headaches. I, too, have only taken tylenol, which does help me, but the headache intensity has lessened as the days since chemo have passed.
lilylady: thinking of you. If we all had full body scans for every possible malady, it would turn out we are all terribly sick in 16 different ways. I hope the liver issue is completely benign. Jenninmichigan had some very powerful advice...
It sounds like we are all DREADING the hair loss. My husband is going to shave his head, too, in solidarity (like yours pennycookson). I just wish I had a choice...Again, it seems so surreal to think it will begin falling out. I, too, got a short haircut (that I love), and it's all lovely today due to the humidity...hard to believe it's coming out in a few days.
Husker: I got a "Raquel Welch" wig. It's a little more volume than I'm used to, but I suspect I will use it from time to time for meetings, etc. My daughters were so excited to see it, but when they saw it, all I got were blank stares.
Not looking forward to Thursday except that it's one more step through this chemo maze. Best wishes to all struggling with SEs. I hope we can figure out how to manage them and minimize them all.
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good morning ladies, Day 4 post first chemo treatment feeling better than day 2 and 3 but still woke up feeling a bit pukey and certainly still tired but it is better so I will grab onto that and look forward to tomorrow when I should feel considerably better. I didnt go to work today, I pretty much figured I would be one week off and two weeks on during treatment and that works fine for my boss he just wants me to get better bless his soul he has been amazing through all of this.I didnt end up shaving my head last night I chickened out but I did get a short cut. Feels weird but its cute, dont really know why i didnt just shave it as this is only going to last 8 more days or so guess I just hold on to maybe I wont loose it, maybe i will be the one ...sigh...Im sure you all had that thought too.
anyhow off to the couch for some tv time lol until nap time...sad...lol....have a good day all.
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Hello ladies,
I was supposed to go to work today, but feel bad again. I had an "incident" last night. Terrible diarrhea, stomach cramping, low fever. Didn't sleep well and am tired and drained feeling again. Today is day #4 post chemo, so waiting impatiently for better days.
I took some tylenol for the headache, xanax for the anxiety, and phenergan for nausea which kicked up after bathroom issues. The smell almost got me, sorry if TMI. Anyway, hoping tomorrowo is a better day.
As many of you have said, I firmly believe in mind over matter and this not being able to "order" my body to get it together is really tough menatlly! I feel really drained emotionally from it. DH is not pressuring me, but I feel pressure from him, to be up and about and normal. He and DD can't seem to function with food without me, either take-out, eat out, or junk. I can't eat normal food yet, the noodle soup I made yesterday was pre-diarhhea, so not sure what to do about them. Anyone have any tips on helping the family through the food thing?
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Hi Barbara - I wish I were there to help you...or maybe just lie around with you! I am still feeling a bit out of it today and I am 7 days out. I would pick up the phone - and call your onco nurse - and see if they think you should come in for some nice fluids. They may even put more anti-nausea fluids in an IV. They did that for me and it was like a miracle....
Annie
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Kymm and Supersally,
I too am day #3 or #4, depending how you count. I had my 4th chemo on Friday, so I am ahead of you all in that reguard. Believe it or not I think this is easier than the 1st three rounds, knowing what to expect. Fatigue is worse and taste buds nonexistant today. Keep taking your drugs, I take mine on the clock, why let nausea, anxiety or pain get ahead of you. Our bodies are working very hard to recover from the chemo shock, and we need to rest and focus on our recovery.
My DH and boys (12 and 14) have not starved to death yet. Before this I was always concerned about our healthy diets, I have realized takeout and pizza will not kill them for a few months. By summer we will get back on track.
Be good to yourself in the next few days, things will get better!
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Good morning Kymn, Dizzy, and others who entered the chemo crowd this week. It is day 5 after first treatment (do you count the first day? I started Thur) and I was planning to go to work too, but isn't happening. I'm better than Sat/Sun, but still walking like I'm 99 yrs old. Had a big D episode last night at 11:00, then 11:30, so then was afraid to take the Ambien. Slept horribly as resultl
Onc nurse called just a little bit a go and thinks I am having a yo-yo effect from Senakot-S and Immodium. I told her I don't know how to eat-to build up fiber, or the BRAT diet. THis happened Friday and Sunday. She wants me to only use the Senakot if I need it-not as a preventive as I was trying before. It is probably the Senakot causing the diahrrea. She also said to be sure to tell the onc at my next treatment; they may send me home with more Dexadron for 2-3 days following to help with the aches/pains or they may suggest Glutimine (not sure how you spell that), which is available from health food stores. But I'm supposed to wait and see what they suggest.
Alternating Tylenol w/Ibuprofin was okay, and even adding the hydrocodone if needed. So I was on the right track with pain control, just probably should have started the hydrocodone sooner (but that plugs me up too!). I am quickly catching on that some of the symptom relief is really trial and error. But as long as today is better than yesterday, I think there is a glimmer that this too (for this round anyway) shall pass.
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Hi everyone....I am so sad to see so many of you gals "hungover". I know that will be at this time next week as I have round 2 on Wednesday. Hang in there girls....once I got ove the hump I woke up like a new person on Day 7 post chemo. I felt perfectly fine after that. I hope you all get there soon!!!! I so wish I could bring homemade chicken soup to all of you! Hugs!
As far as food for the family, I have chemo on Wed. I cooked yesterday and have leftovers for Wed night. I will cook a few extra things today and tomorrow so my family is fed well for the rest of the week. I have also frozen some stuff that I cooked before. So I am just planning in advance so I don't have to worry about them. Last time I didn't eat everything they ate...I wanted more bland stuff. I love making whole wheat orzo cooked in organic chicken broth with a sprinkle of parmesan cheese. I live for that when I don't feel well.
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Hi All,
Just wanted to chime in here for a moment. I had my first round of TC on the 15th so this is day 6 for me. So far so good. A bit of an upset stomach and some minor body ache but certainly not anything I can't handle. In fact my SE chart rates only zero's so far. Hoping that keeps up. Like many here I am DREADING the hair loss. I told my 7 year old that is she hears mommy complaining she is to tell me "it's only hair mommy!". I am trying to be positive and looking my best throughout all of this crap is a goal for me.
Went wig shopping with my BF ( we made up for the time being) and all he did was make jokes and got turned on. I think the it was because I looked so different in the wig. LOL Men! Such simple creatures.
Plus...I'm bored! I think my upset stomach may come from the fact that, now that I have the time, I have been making a bunch of new healthy dishes. I LOVE to cook and discover new foods. Today I made an Asian Quiona and a cake made with beets. My daughter loves my cooking and has no idea what fast food is all about. I have to laugh at myself as when I make a plate for her I do the whole "presentation" thing. LOL
Ok, I am rambling. Hope you all are doing well!
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Timerdog: I too am cooking up a storm with the healthy foods that are OK for an ER/PR+ BC gal. I made quinoa risotto last week. I have a 4 year old that has been enjoying most of the healthy, new, adventurous foods I have been making. He loves my oatmeal, bananna and cinnamon muffins. I can't make enough! I guess I am lucky he is eating most of it so I don't have to cook two meals every night. I refuse to do that!
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Hello ladies, hope you don't mind if I join you in here. I just got back from my first treatment of AC and am really tired. Already? Is it just in my head? My DH says maybe it is just coming down from being so hyped up about the whole process. I am having the chemo before surgery, so I did not have a lot of time to get ready for this. And I still have to get a wig or at least some scarves or hats. I think I am in denial about losing my hair.
Any way, I'd love to join you with a Fuzzy Navel, that fits my head now, a little fuzzy. So happy to have found a place where others are going through this as well. And I even saw one person is at the same hospital, the Univ. of PA. Enjoy this rainy (at least in Phila.) Monday every one. Cheers!
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Ok Maria...just for you.
1 c. water
1/2 c. Quinoa
2 tablespoons rice vinegar
2 tablespoons plum sauce
2 cloves minced garlic
some grated ginger ( great for the tummy )
pinch salt
Cook until water is absorbed then place in any veggies that need to be devoured.
For those of you unfamiliar with Quinoa is a more complete protein grain then barley, and whole grain rice. It has a nutty mild taste. You can also toast it lightly before cooking it to add more nuttiness.
Maria I also make a risotto with mushrooms and the quinoa.
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JeninMichigan, thank you so much for your most inspirational story! I have read it twice already just to glean all the information from it. My dx is slightly different from yours, er/pr + and her2 negative, but nevertheless, your words of encouragement and advice are ones I plan to keep in my mind if ever I run into obstacles in my medical treatment.
p.s. How did you find a reputable naturalist, someone who really knows what they're doing and isn't just someone mixing a bunch of herbs up to make money?
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Jeninichigan. You are truly badass...thanks for sharing your story. I think the new sophistication in pet/ct scans is incredible, but also putting so many people in the stage iv/just go for quality of life category, that just a couple of years ago would have been considered earlier stages. Think the lesson is not to let staging decide your fate.
TheDivineMrsM - if you're interested in a naturalist, I would try to find a complementary doctor/oncologist who is associated with a major medical institution. then you're getting a medical doctor, but also someone who will share with you things outside of the mainstream of traditional oncology. I look at it as chemo accessories...I'm on a couple weird sounding things as well as stuff to help with the chemo side effects. (Mine is with Beth Israel's Continuum Center for Health and Healing. Couldn't trust them more.)
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Hi Kay,
I was also exhausted after AC - some people find days 1 and 2 better than the following few, but I know that I slept pretty much through days 1,2 and 3.
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Hi ladies - I'm so sorry for all the hangovers but agree with mdg that you WILL have good days again soon and the funny thing is that after the chemo hangover, the good days are just SO good because it's a relief to feel kinda normal. Today I'm in a bit of a funk because my hair is coming out in large numbers. Yes I have the wig ready but it's still a bummer...
Jen - thanks for sharing your story. It is so inspiring and helpful to hear. You rock!
Kay - welcome! So glad you've found us. I'm also on AC then Taxotere before I get surgery. I was immediately knocked out from the first chemo (I'm preparing for #2 this Friday). I'm sure my nerves contributed to it. Take care and keep connected here.
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