August 2015 Chemo Group
Comments
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abart it's normal to feel emotional when we're sick, and to be made to be sick to treat an illness is like adding insult to injury. We all experience a wide range of emotions. Most of mine I'm afraid to admit, have been angry. It sure is normal to be depressed and weepy and yes sometimes hopeless. But if you continue to read and spend time with us, now and then you'll laugh and feel happy, and to experience Hope again.
Some of the ladies will help you with tips to manage side effects, stuff to talk to your MO about, and just offer a virtual hug when you need it.
There are lots of folks here with lots of good information who share their experiences, and we can all relate to at least one of our chemo sisters, Welcome to the family.
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grey I was petrified about my pet scan too. But think of it this way. If there is other cancer, not knowing doesn't make it go away. It just helps the doctors come up with a more comprehensive targeted treatment plan. I have chemo behind me and I thought it would never end but it does. Five months of treatment is just a small length of time in a long life. All I can say is find some inner strength within you and don't let others fill your head full of crap. It is your life, and even when bleak, it is the only one you have, and nobody else walks in your shoes. Some day very soon treatment will end, and the sooner you do it, the sooner it is done.
I worried about all my treatments, how long they took, and then one day went for a walk among big old trees and stood in front of a tree that has survived 440 years. It made me realize that time passes, people and things survive, and you just press on with life.
As for anybody who is not supportive, the hell with them. It is your life to live, and people are either there for you or they can go away.
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just a quickie
Tam, I take generic prilosec 2x a day and have no issues and it was okay by MO
For those that have had ALND, do you notice a difference in your arm when humidity level is up. Trying to figure mine out. I have just a tad bit that isn't concerning, but trying to find reason for it and it is really humid right now and of course the a/C decided to be on the fritz. Fortunately a cold front is coming and we will be much cooler
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Greytmph2 - I am so sorry you are going through all this and without a solid support system. I can't imagine. Tough enough to do it with people on your side but you certainly sound like you are going forth alone (except for your friends here!). I know I have gotten several invites through various places of breast cancer support groups. Perhaps reaching out to one of these groups may give you some 3D support will help you deal with all of this. Meeting people in similar situations and developing relationships with people who understand what you are going through may get you through this difficult time. And doctors don't know everything. I would fight with everything I got to prove them wrong. 3 years could be 8 years could be 12 years. One never knows. Don't give up hope. Hope is everything. I am thinking of you and will pray for easier times in your future.
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any one have any ideas on how to keep this "magical mouthwash" ..... that is neither magical or mouthwash....down. just the smell is making me want to puke!!!!
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@mama-bear, are you referring to Biotene? I haven't even tried it. I bought some Tom's of Maine instead because it has aloe vera in it. I don't find the taste bad at all. Just a thought.
@greytmph2, I would encourage you to pick up the phone, right now, and call the American Cancer Society hotline, which is 1-800-227-2345 (click the link to learn more). They will understand what you are going through, and they can help you find a support group that you can join to help you cope. Tune out the people telling you negative things, and try to tune in to your own heart and soul, and whatever higher power you feel supports you. You sound so overwhelmed, but you would not be reaching out here if you felt completely hopeless. That means there's a core of strength inside you that you can draw on. You don't have to go through this alone, and you don't have to take anyone's word for how your situation will turn out, because you are in charge of your care. And we'll be here waiting to hear how it goes for you.
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no I am talking about the mouth wash for thrush.....
just one more se to add to the list. And good advice..... reach out. This is scary and we all need help getting through this!
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greytmph2, you are not alone! We are here for you. It sucks for all of us...but we can do this together. My heart goes out to you and Bunnybumps and the rest of you having such terrible SEs.
I was scared to have the PET scan done as well. Grey, you said you have a fiance--are you planning a wedding? Is your fiance a loving and warm influence in your life (because if not, I'll have some words
)? People with stage IV are living longer these days and handling life with a chronic illness. You have every reason to believe you'll have a healthy PET scan with no mets & then you can worry a little less. (((hugs))) Please do reach out to the ACA for help!I feel like crap, but it's the regular sort of crap. The anhedonia is frustrating, as I can't fill the hours of fatigue with anything. I try to read but don't care & try to watch a show but don't care & try to eat but don't care (and have nausea). You'd think it would be valuable to have free time, but as it turns out, not so much.
Taz, I haven't noticed a difference in my affected ALND arm from humidity. I'm always cautious about the arm in general, though, and wonder if I'll ever stop worrying about it.
Theresa, I love what you said about finding the old tree and marveling at it. It's hard, in the moment, to remember how many wonderful experiences and adventures are still out there waiting for us.
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After reading posts on here, I believe my MO must be the most lenient person ever when it comes to diet, because he is not the least bit restrictive. He said I should eat anything I like because I have poisons coursing through my body killing everything in their way. He pointed out that all of the diet = recurrence studies are done post-treatment, and as long as I avoid salad bars and sushi I'm fine (and I don't think he cares about the sushi). I like what someone wrote in another BCO thread about even dogs getting cancer, and they don't drink alcohol...well, it made me laugh.
One of the few things that appeals to me right now is veggie pizza, so I'm eating it. And I'm having some chocolate cake every night that helps me get in another 16 ounces of fluid (skim milk, in this case). Bonus...chocolate.
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Just had my 4th at home injection of Neupogen. I find the idea of it worse than the actual prick and H does it quickly so that is a good thing. No side effects aside from a dull ache in my hips now and then,so another win there.
Waiting for my sharp stubble to fall off my head. The feeling of my head getting caught on fabric and pillows is so strange and annoying. I'm preferring scarves to hats but some of my scarves are made of material that makes my head too hot. Again not the worst thing that could happen.
I've been schlumping around home since my last chemo (and my low WBC) and today I actually got ready and threw on the wig and went on a short journey with my sister. I felt a little dizzy in the car but it was nice to go out and rejoin the world for a short time. I feel like it makes so much of a mental difference to shower, get dressed and throw some makeup on.
I agree that a good, positive support system is key in this journey we are taking. If you can't find it in person, find it online, find it somewhere.
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Michelle, I felt better after shaving my scalp. It's been a couple of weeks since then, and I still have some stubble, but it doesn't migrate anywhere.
I mostly go out bald, but at night I place a soft blanket around my head in a sort of cushion.I'm a wuss about the Neupogen & I'm into the third series of weekly injections. I think it's my one opportunity to kick up my heels and put up a fuss, so I act like a baby and then try to suck it up through the rest of these horrid treatments. Not much of a coping mechanism, right?
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JenPam I never even thought of shaving! I will likely do that tomorrow! I'd rather have a smooth/even head for sure. I actually wouldn't mind going out bald. I kind of liked my buzz cut but currently have stubble and some rogue longer hairs that didn't get shorn off properly.
As for the Neupogen, you are totally allowed to put up a fuss about those pesky shots. who wants shots? Nobody! I still squeal the whole time!
I was also never told not to eat certain foods and only heard of the fresh food and seafood on here. I eat relatively well so I'll just eat what I feel like eating!
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Grey, I would look for a support group and stay away from those ignorant people. It is rare that you would have a scan and find mets with all the info in your siggy. So you need to focus on that and that alone and take it day by day. This is from someone who since day one imagined cancer coursing through every part of my body. I wish they would of scanned me, I welcomed it but they did not offer it and I won't get any kind of scan till a long time from now and I think she said only a mammogram. I want to know its all clear or its not. I still get times where i think its all over in there but I put it out of my mind because its a slim chance. Also I know a lady from church who has been stage IV for 6 years and she is still responding well and having no growth so 3 years is not even accurate. Lots of things determine your time, but you will be fine. Get the scan to ease your anxiety and tell that butt that you won't be there for Thanksgiving not because you will be in hospice but because you will be with people with a lot more tact and class than her... and even if thats too soon to have a supportive circle then you can spend it with your dog. It will still be a better time. Cannot even believe the level of idiot in some people.
As for me, I think my time with hair is coming to an end. I would do the hand through the hair test multiple times a day and get 1 hair or no hairs, but not today. Not one time has it been one hair, not clumps or anything but I am shedding. My scalp is not doing anything either no tingling or nothing so for a brief moment yesterday I was thinking I would be a rare one and have extra time with my locks... nope... Not sure how long I have but not much I suspect. I am ok with it, come to terms with it. I have not found a hat I like but new ones arrive the 10th I think it said. I might wake up tomorrow with it everywhere I heard when it starts coming out its pretty quickly. Other than that after the worst day which was 6... I been pretty good. My feet are weird but not numb anymore, They been pretty normal the last couple days so I don't know what the coming and going means for neuropathy. I been feeling pretty much normal but this is my last week before I get my second round of my sacs o' poison. Cramming as much work as I can in this week. I do sports photography and am going to as many games as I can this week because I was useless the 1st week round number 1. I am worried the s/e will be worse because they are cumulative. I did good round one except for that bone pain which i am ready for this time. That won't happen again but I could eat whatever, I did not feel like eating but nothing bothered me, no nausea and no meds for it even taken, no weird taste, nothing digestive and after a week I felt the haze lift and I was alright. Did not even need my naps anymore... So aside from the feet and numbness, bone pain and sleeping most the days away in the first week, it was mild. So still waiting for the shoe to drop I guess but the 14th will be one step closer to end... I am counting it down... will be 2/3 done!
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michelle, my buzz cut lasted all of one or two days before I started getting the painful sticker hairs...thus the razor. I have to say, it felt pretty good slicking it all off--but then again, I'm the person who always shaved her arms and not just her legs. What can I say, I like to feel smooth, and now I'm smooth *all over*. *inappropriate woot*
Sacs o' poison indeed, gooseberry! Counting down is how I'm getting through this upcoming week for sure.
I'm off to Nordstrom this evening for my silicone foob fitting. I'm a no-recon patient, so all I wear is either a binder or some microbead foobs. This will be my first actual silicone set. I have trepidation because I don't know what to expect, but I've circled the Nordstrom counter a few times in the past several weeks to meet the staff and they seem reasonably approachable. I will likely only wear silicone foobs on the occasional date night, and otherwise wear nothing or the microbeads, but it's nice to consider having something that will enable me to wear all the beautiful dresses and tops I already own. I'll be sure to let you all know how the foob evening goes. My DH is going with me & we're going to add on some mall walking and CPK dinner.
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Wow, a lot has happened here in a couple of days.
Grey, I second what everyone has said. There are many resources out there, and you don't need that crap right now. Please reach out and let us know if there's anything we can do to help.
JenPam and Michelle, I went cueball bald yesterday, and I have a whole new level of respect for folks who shave their heads on a regular basis. It took four 4-blade razors and a lot of patience, but now I'm SMOOTH. I highly recommend it; it's way better than hair splinters (another new and fun thing I'd never even considered).
JenPam, keep us posted about the foobs! Overall, I like my prosthesis, and I hope you like yours, too.
Gooseberry, I had weird tingling that resolved on its own, too. I'm wondering how much of it was me looking for it and the resulting anxiety.
Quick embarrassing question, even though by this point you'd think we'd all be over the embarrassment: has anyone else had weird, intense groin itching? Not in the lady bits (thank god for small miracles), more where the thigh meets the torso. . . . I'm losing my mind over here. It looks a little like poison ivy, which I've never had and haven't been exposed to recently. Sigh. I really hope I don't have to call the doc for this one. Cortisone cream to the rescue.
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Abart - You are not alone. I've had some really down times and weepiness. It was worse right after chemo when I was feeling badly. I've read that depression is considered an SE, although I would say it has been happening for me since I found out I had lymph node involvement. It helps to know it's just temporary. I always get past it in a short time. Getting outside and doing normal things is the best medicine I've found. Before chemo, we were hiking on the weekends and that was so much help. Now I'm taking walks and this weekend a few kayaking excursions. I always feel recharged and in a better frame of mind after getting outside.
Grey - Please call the number Mom2aboy posted. You need and are deserving of support. I was so scared of having the PET scan and was a complete basket case the day before finding out the results. I kept telling myself that the test results were not going to change my health. They would only make me more informed. Repeating that to myself brought me some short term peace of mind. Please hold onto hope. We care about you!
Tazbear - I'm glad to know Prilosec works for you. I'm hoping that is what my MO recommends. How is your hair holding up so far? Last night I had some scalp sensitivity, but my hair is still holding strong. I keep waffling about when I want to get it buzzed.
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Kate - I haven't had that happen, but it sounds a lot like either a heat rash or yeast rash. My husband had that happen a few years ago. He got a cream for it, but the thing that helped most was just sitting in the sunlight for a few minutes every day. If you have a place in your house or yard where you can be "exposed" without being seen by neighbors, I would recommend getting a little sunshine. UV light kills most fungal infections. Whatever you do try to take a little extra time to air dry after showering before you dress. Good luck!
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Tam-iam, the mental image of me going out in my urban yard to sun that particular area just made me laugh out loud--thank you. I'll try it, perhaps indoors.
Re: the general discussion about emotional ups-and-downs . . . I think it's common, or I want to believe that it is. I've found that days 5-6 are just awful for me, in terms of depression and anxiety. Last time around, I was terrified that the cloud wouldn't lift, but then it did. I'm on day 6 now and trying to pay attention at work but distracted by various things going on (none of which are related to cancer treatment, other than the annoying hungover feeling and itchy groin), and getting a bit overwhelmed. Last night I was anxious and started to imagine that my fingers and toes were going numb . . . which made them feel weird. Today, that seems to have resolved itself.
Cancer, you are one mighty b*tch. And chemo, I appreciate you for what you do, but you are a giant pain in the a$$.
In the wise words of an old friend of mine: "this, too, shall pass like a kidney stone."
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Kate: have been wondering how the transition to work has been and thinking of you often. Hope it's a good distraction and you get a giant nap later.
So I've learned many things about myself on this journey and one is that hairstyling is worth paying for--even when it's not real. I tried to trim one of the hair hats I bought on Etsy into a little bob. It's fine and will be great for running to pick up kids at school, walking the dog we may get now that I'm home all day for the first time ever, going to my kids' soccer games. I will trust the other two I bought to a professional. Although once I put it on--I never wear hats because I have a huge head--I started singing Spice Girls songs. Apparently I think I'm a bad ass now.
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Kate, call your doctor about the rash. I just got out of the hospital and every nurse asked if I had a rash. I didn't and don't know why they asked, but it seemed important.
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abart, this is all normal
it gets better
and/or you cope with it better
hang in there
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Hi Kate, I had similar rashy issue with my, er, buttcrack earlier. After continuous use of antimicrobial silver cream (like what they put on burn victims), it went away.
You guys really inspired me to do the wig thing and it makes a HUGE difference, especially on the job. Got lots of compliments! Being bald at work, at least where I deal with the public, is not an option. I don't go sailing or turn wrenches with the wig, just wear it in the store. Here's two photos- I look like a whole different person! (Grouchy bald vs happy perky hair)
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I'm loving the hair pics! You ladies look lovely.
Update: blame the decadron. Always blame the decadron. I called the doc and am told that whatever is going on now has everything to do with Burning Crotch Syndrome, and that they'll do a slower drip of the pre meds next time.
I'm told to 'keep an eye on it' (easier said than done, it would seem), and to let them know if it gets infected. In the meantime, cortisone cream to the rescue.
I repeat: BLAME THE DECADRON.
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Birdysmom, both looks are hot!
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Day 5 today. Better than day 5 last time but day 4 this time was a real challenge. Off to bed now, really tired but I have my 10 year old snuggle buddy with me til I doze off. Feel well friends .
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Kate, I had the groin rash as well as bumps on my neck the first week after chemo. I used hydrocortisone cream and it resolved on its own. As you may remember, my bungholeo gave me a terrible time, too. Itched like crazy!
I shaved my head last night and it feels great! I'll try to post a pic.
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birdysmom - Wow! Both pictures are great!! You look so innocent(!) in the second pic, but WE know you have a badarse side to you! It's that strong side that makes us persevere.
On a side note, I just watched Venus and Serena play. What a great match.
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Carolyn - that picture is amazing!!
Birdysmom - the wig looks great! Is it comfortable? I love both looks.
I just ordered another wig. my insurance covers most of it and I'm thinking I should get used to it when it comes to going back to work etc. or should I rock the baldy head in a semi formal corporate environment? Bald badass in a skirt suit?
I found this head scarf trying video and have been wearing my scarf tied like this (ish) a couple times this past week. Pretty easy and secure using the hair elastic.
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Hi everyone,
This is my first post. I finished my 2nd AC on 8/28 and it kicked my butt. I'm 46 and feel like I'm 106. I had a fever and chills on Sunday so went to the ER. I was admitted because I was neutropenic and anemic and they were concerned I had an infection. Just released today. Feeling better but still tired and food is unappetizing. Still recovering from thrush too.
My MO says he'll modify my next AC this Friday so I'll do better. But I'm nervous if I'm going to have to go through hell again for the next one.
A little about me. I'm a mom of 3 (17, 13, 4) and I'm the primary breadwinner and my DH stays at home to take care of the kids. Our youngest has autism.
Anyone go though something similar with 2nd AC? Was 3rd dose worse? Any advice appreciated and I look forward to meeting you all
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