Calling all TNs
Comments
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NavyMom, Karen --Thank you for warm welcome!
Similar to most of us, I'm not tired from
radiation like chemo,..not yet... however, I 've tried to take a rest as much as possible. Someone say after round 15 it could make us be fatique. I shall see that next week!
Today I went to the hospital to do breast MRI. When I arrived home, I got phone call from Dr. ..she said after seeing mri nothing to be concerned. Anyway, she wanted me to get ultrasound my left breast to check sth...
I need to make an appointment then..0 -
Nuan, rest as much as you need .Radiation does catch up with you.
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Browerl - I was given Dexamethasone (steroid) to be taken the day before, the day of and the day after chemo (2 twice a day) and then 1 a day for the next 2 days. I also took 1 Zofran (Ondansetron) (anti-nausea) in the morning before chemo and 1 that evening and the same the next day. I also had a prescription for Prochlorazine (anti-nausea) to be taken every 4 hours as needed.
It seems to me that I might have read that some on this site have been given the steroid intravenously at the time of their infusion.
Anyway, that's what I was given but, as you know, treatments can vary from one doctor to another - so maybe FernMF will not have medications to take before her treatment.
Doreen0 -
DorMac-I was given steroid and anti-nausea meds intravenously then chemo one right after another along with iv fluids. I have prochlorpazine for nausea every 4-6 hours as needed, but I was not given anything days before. It is amazing how we all may have tn but each doc treats it a little different.
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CaliMom,
My father had chemo at age 83 for esophageal cancer - he had 5FU and possibly cytoxan or one of the carboplatin type drugs, can't remember now - but I do remember the oncologist telling him that because he was in such good physical condition for his age that he was going to give him what he would give a 35 year old. My dad's cancer was inoperable due to its location. He had a complete two year remission from the chemo and after recovery from the chemo, was back to living alone in a two story house, clearing brush, gardening, etc.
I had a 2 cm or 2.5 cm tumor (MRI/mammogram) and also had implants at the time. I opted for a mastectomy of the left breast and then opted for radiation due to having 2 positive lymph nodes. This has really impacted me in terms of reconstruction but without radiation the reconstruction would have been much easier. I have seen some really good results when women have the NSM and reconstruction with implants. I was originally diagnosed triple negative but when they did the mastectomy following my initial chemo they found 5-10% ER receptors in the remaining tumor. I even opted for additional chemo for four months after surgery in a clinical trial setting. Hopefully your mom's visit with the acupuncture doctor will lead her back to chemo because it really is needed for triple negative. I'm sorry you are in this position; it must be very difficult.
As far as any advice - If I had everything to do over, I would have gone to one of the very best cancer centers in the country at my initial diagnosis. They simply deal more with triple negative than other places. I sometimes wonder if I had had a carboplatin drug instead of cytoxan if I would have had a complete response to chemo - which is associated with a better outcome. I also feel if I had been at MD Anderson or one of the larger centers that I would have been scanned during chemo instead of just given a physical exam.
Christina
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I am really having a bad hair day. No matter how prepared you are for it it hits you like a wall falling down. I was showering this morning just 12 days after my first chemo and my hair is comming out in clumps. I just sank to the bottom of the shower and cried the hair was all over my hands and you can't get it off. I will call my hairdresser tomorrow and make an appointment to shave it off and get my wigs fitted. It is only 12:00 but I am having a glass of wine.
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browerl- so sorry. I think the hair coming out is one of the hardest parts of this whole mess. I had my husband buzz my hair. I didn't cry until he was done and I looked in the mirror. Have that glass of wine and maybe a little chocolate too!
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Browerl--So sorry you have to go through this. I can so relate. It seems that no matter how prepared we are for hair loss, it is still a shock. Try to remember that no one loves you beacuse of your hair. Wear your wig, scarf, hat as a badge of courage. Jan
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browerl-you are right. There is nothing that can prepare you for the hairloss, it is a very difficult part of this journey. I also had my hubby shave mine, and I do think it is best to shave it instead of letting it fall out. It is a control thing. I chose when to get rid of my hair, even though I knew I had to do it within a certain timeframe! Find a beautiful wig and some scarfs or hats for when you do not feel like wearing the wig.
Luan-I love that people from all over the world "meet" here! Your english is very good!
Tif-I have been feeling pretty good. I still have issues with range of motion and tightness from my bmx, so I go to pt 2 times a week.
My bone scan is coming up:( I try not to think about it, but I am stressed about it. I have some hip pain, so my mind goes to dark places...
Hi CS, don't forget your computer or watch!
Thinking of you Hope, Steph and inmate.
Steph, so sorry you got the news of lung mets. Hoping chemo will blast those spots away!
BE-can you get my dogs to obey that list?
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2 of my dogs with my mid life crisis new car!
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browerl - the loss of my hair was the worst thing for me too. Losing my breasts was far easier emotionally than losing my hair. Make sure you get a comforable wig. Mine was a little tight but I was told it would stretch. Well, it didn't and I'd have a raging headache after wearing it more than 4 hours! It looked great but I hated it.
Those of you who had rads... I finished last Monday, and my rad site looked fine, just a little pink with some spots. Well now a week later it is awful! Huge scabbing blisters covering 3x4 inches, tight skin, pain - I can't believe what a change. I went caving last weekend and now I can't imagine doing anything physical, the pain and loss of mobility is so much. Does this sound normal? I called the rad onc Friday and they said yeah, yeah, normal, put aloe and cream on (the silver stuff they gave me). Is there anything else I can do to heal this up faster? One week from today I'll be at the ocean and I can't imagine letting salt water touch this.
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First Browerl - I am so sorry... that was the first thing I really cried hard about too. It took me a day to get an appointment with my hairdresser. Once my head was shaved I had to laugh at how small it looked. And then smile at how beautiful my eyes and smile were. The good thing about it is it brings out your eyes! 2nd, is if you ever had aspirations of seeing what it's like to being a Burnett or redhead this is the time to do it!
Your Avatar picture show you to be a beautiful young woman... you still are. Think of it as an experiment, on how people treat you as a blond vs; brunette vs; redhead. Have fun with it. If you don't want to wear a wig... like when its real hot out, then be a trend setter and go all natural! lol Remember it's only for a short time in the big scheme of things. I do remember crying for a bit...as it made me have to realize I did have cancer, which was hard to accept, when I really didn't feel sick. I know you can do this like the rest of us. It sucks and slows us down for a minute, and in the moment feels scary. But you can get through it. BTW one of the good things of loosing my hair is I didn't have to shave my legs for almost a year! Bonus!! Make fun of it. I will keep you in my prayers.Sugar77 and Christina1962 Thanks for the encouragement and stories. I wil encourage her to do more research so she feels comfortable.
I will be seeing my Mom later today to tutor her on her computer!! She says she can't figure out how to send out mass emails! Hahaha I want to show her this blog spot but won't tip her off to me being here for advice. Thank Goodness there are a lot of different forums.
My Plate is about to get fuller! Full of little boys' laughter, rambunctiousness and patter. My oldest daughter is sending my 3 lil grandson's out here to Cali, for a week, cuz she is exhausted, as a single parent. The boys are 2, 5, 7 yo. They live in VA now, and I havn't seen them for almost a year, so this should be fun and a good distraction. God Keeps sending me opportunities.
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minxie - I had severe burns from rads (I was 69 at the time) and RO tried several things. The only one that felt good was XEROFORM. It is a gauze with petrolatum (think vaseline). It took several of the 5x9" dressings to cover my wound. These dressings are made for burn victims. All I can remember it was soothing and kept my skim supple. DH had to buy it at a medical supply store, but local drug store might be able to order it. Good luck. I can't imagine getting sun, salt water, and sand on your rad site. Jan
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Browerl . . . I'm with you . . two weeks from now . . . I am calling my hair dresser tomorrow and get a short pixie cut . . . and go wig shopping someday this week too . . .
Thinking about you all . . and STILL scared here in WV . . . .
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Brower - hugs! It is sad and messy, when the hair goes. I bought an electric trimmer and did my own the second time. The time around, I wore little hats - designed for chemo ladies, the second time, I just went bald - everywhere!
I was fortunate that I did not have to go to work in an office or with the public.
After you have it shaved, you may want to put a slip or silky nightgown over your pillow. It makes for less friction.
Bak - I love the photo! Are those dogs, trying to keep you home?
Fishinurse - I am so sorry you have to go through all this, and have the additional burden of being out of work. It is hard to look at yourself and think "how the he'll did this happen?" I'm always telling my husband - "Sorry, I never saw this coming" No boobs, scars galore, white hair and 20 pounds overweight. I paint my toes bright pink - it cheers me, both in color and the fact that I can still reach them!
Minxie- Ouch! That sounds terrible. I hope it clears up in time for your beach holiday. Maybe one of those sunblock shirts?
Calimom - enjoy those grandchildren!0 -
Steph - so sorry about the mets. Praying that this chemo is easier for you and blasts the sh*t out of the mets. TN SUCKS!!!!
Cali - I'm so sorry for the position you are in. Ultimately, right or wrong, it's your Mom's decision, but I can't imagine how hard this is for you. I have nothing against alternative medicine, but I don't think it's an effective weapon against TN. Have fun with your grandchildren.
LuvR- thank you so much for that link.
Lisadi - congrats!!!
Nuan - welcome to our group and congrats on the good MRI.
Fishinurse - vent away, that's what we're here for. While my friends are wonderful, I only truely felt comfortable coming here to vent. Nurses are strong.......you will make it through this.
Fern - the fear really is worse than the reality. I'll echo Dormac, drink, drink and then drink some more. Stock up on some laxatives and Immodium, so you're prepared for whatever your bowels decide to do.
To avoid nausea, of course take your meds, but make sure to eat something small every few hours. I thought it was nuts, lol, when somebody posted that tip, but it really worked for me. (I only had one brief episode of nausea thru my whole treatment).
Brow - I had no pre- meds with my treatment. No matter how we prepare, it's a punch in the gut
when you lose your hair. (HUG). I agree with Cali, I found it easier
because I had fun with it. (5 different wigs). When I went out with my friends, they were making bets on what color of the day I would appear with!
Bak94 - praying for a clear bone scan.
Minxie - Sounds about like what I had. I used Bactine no sting spray with lidocaine to numb it so I could get some sleep. Salt water my be very soothing, but sun, sand and sitting in a damp bathing suit don't sound like a good idea.
Christina - if it helps reassure you, I went to one of the top centers in the US and got A/C and Taxol and no scans during treatment.
Cocker - you need to have some fun with the tut-tutting Dragon. Pack a really glitzy gaudy hat, a boa, high heels and a large bottle of whiskey. About 5:00 am, in your nighty and knickers, put on the hat, boa, heels and grab the whiskey bottle. Sneak out the side door and then ring the bell. You'll shock her so badly, that sneaking out to have a fag will seem mild in comparison *gigglesnort*0 -
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Hello lovely ladies...Just checking in. This is the first time I've really felt up to it, although I'm doing my best to keep up with my reading here. It seems my cognitive skills are coming back on line. But I'm still having some balance problems on my right side. I have a walker, which I hate. I mostly use it outside the house. I love walking in NY, but I haven't been able to do that! I have a physical therapist coming to the house today and hope she will help me graduate to a cane. I would be much more mobile. Still going for daily brain rads, and now my hair is falling out again in gobs. Oh well, the least of my problems,right? Still living on something of an emotional roller coaster....sometimes I'm fine and sometimes I cry alot. Thank goodness for Ativan. Also still no no word from my MO who put me in the hospitalto begin with, and no word from the RO who's treating me now. I just see the techs. What's up with that?
Inmate - I think of you all the time.
Lovely - thanks for the kinnd words. Yes we were on the same schedule but you never know where this effing disease will take you. Not to worry though...I still think my situatiion is very unusual. More later, I hope. Have a good day, all!
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Hello lovely ladies...Just checking in. This is the first time I've really felt up to it, although I'm doing my best to keep up with my reading here. It seems my cognitive skills are coming back on line. But I'm still having some balance problems on my right side. I have a walker, which I hate. I mostly use it outside the house. I love walking in NY, but I haven't been able to do that! I have a physical therapist coming to the house today and hope she will help me graduate to a cane. I would be much more mobile. Still going for daily brain rads, and now my hair is falling out again in gobs. Oh well, the least of my problems,right? Still living on something of an emotional roller coaster....sometimes I'm fine and sometimes I cry alot. Thank goodness for Ativan. Also still no no word from my MO who put me in the hospitalto begin with, and no word from the RO who's treating me now. I just see the techs. What's up with that?
Inmate - I think of you all the time.
Lovely - thanks for the kinnd words. Yes we were on the same schedule but you never know where this effing disease will take you. Not to worry though...I still think my situatiion is very unusual. More later, I hope. Have a good day, all!
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Hello lovely ladies...Just checking in. This is the first time I've really felt up to it, although I'm doing my best to keep up with my reading here. It seems my cognitive skills are coming back on line. But I'm still having some balance problems on my right side. I have a walker, which I hate. I mostly use it outside the house. I love walking in NY, but I haven't been able to do that! I have a physical therapist coming to the house today and hope she will help me graduate to a cane. I would be much more mobile. Still going for daily brain rads, and now my hair is falling out again in gobs. Oh well, the least of my problems,right? Still living on something of an emotional roller coaster....sometimes I'm fine and sometimes I cry alot. Thank goodness for Ativan. Also still no no word from my MO who put me in the hospitalto begin with, and no word from the RO who's treating me now. I just see the techs. What's up with that?
Inmate - I think of you all the time.
Lovely - thanks for the kinnd words. Yes we were on the same schedule but you never know where this effing disease will take you. Not to worry though...I still think my situatiion is very unusual. More later, I hope. Have a good day, all!
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Hello lovely ladies...Just checking in. This is the first time I've really felt up to it, although I'm doing my best to keep up with my reading here. It seems my cognitive skills are coming back on line. But I'm still having some balance problems on my right side. I have a walker, which I hate. I mostly use it outside the house. I love walking in NY, but I haven't been able to do that! I have a physical therapist coming to the house today and hope she will help me graduate to a cane. I would be much more mobile. Still going for daily brain rads, and now my hair is falling out again in gobs. Oh well, the least of my problems,right? Still living on something of an emotional roller coaster....sometimes I'm fine and sometimes I cry alot. Thank goodness for Ativan. Also still no no word from my MO who put me in the hospitalto begin with, and no word from the RO who's treating me now. I just see the techs. What's up with that? Inmate - I think of you all the time.Lovely - thanks for the kinnd words. Yes we were on the same schedule but you never know where this effing disease will take you. Not to worry though...I still think my situatiion is very unusual. More later, I hope. Have a good day, all!
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Been away for the weekend, got back and just read all your posts to which I will never be able to respond to them all - but doesn't mean I am not thinking of you. As Thursday looms closer my ability to concentrate on what I have read is diminishing with every minute.
Cocker: I would like to say ‘bout bloody time you got back to us... stupid chemo brain making you forget your laptop.
Bernie: thanks for your humour.
Welcome to the newbies (of which I still consider myself one). Sorry you have to be here, but you've found a great home.
I am sorry that some of you wonderful ladies going through more crap and sending you positive vibes for the right outcome.
I am finding it very difficult to even say what I want at the moment, except I am so happy to have you all here. I have found so much strength and inspiration from your posts... the laughter, tears and rants.
Hope your day is filled with love and laughter and those going through chemo, with very minimal SE's.Love and hugs xxxx
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Good Morning Ladies,
Hope....so glad you are feeling a bit better. Here's hoping for progress to the cane. My gran actually tied fake flowers to the front of her walker. Perhaps you can decorate yours? Of course she also glued rhinestones to her eyepatches so they would match her outfits. Maybe juts one or the other, don't want to over accessorize. Sending you extra happy thought!
I start Xempra today. I have done pretty well with all my other chemos so I am hoping I can continue to stay active and focused with this one. The doctor did not give and end date to this treatment. For now it is 3 on 1 off. Oh, the games begin again. Non too soon as my mets seem to spread over night. Little friggin buggers! Can't wait to watch them melt away!
Have a wonderful day, wonderful ladies!
Love to you all............dawn
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Bernie.......your chemo diary absolutely had me rolling in tears. You just can't make that s**t up. Yours is the perfect example why I suggest to all newbies to start writing it down. When you look back you will find that even when it's bad, there most certainly is a good laugh that can be had. Love you for all your humor.
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Hope - its great to hear that you're doing so well. I know you must hate the walker, but I'm amazed that you're up and mobile so quickly after all you've been few these last few weeks. Along with Inmate's suggestion of flowers, I vote for a horn so you can honk at people to get out of your way. Hope PT gets you ready for graduation to a cane quickly.
Tazzy - I hope you had a wonderful weekend! We'll all be here holding your hand Thursday.
Kick ass Inmate!!! I second you on the journal, I really wish I had
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Hi Hope-Thank you for checking in. I also hope you get to where you can use the cane. Yes, the hair does seam like a small part of all of this, but upsetting anyhow. Do as inmate does, rock that bald look! I hope that the rads are smashing those cancer cells into oblivian!
Hi Inmate! A gal on facebook triple negative had a question for her mom on skin mets. You had mentioned a trial for a topical chemo cream? I had heard about something like that awhile back. The other problem is that she may not only have skin mets but a tumor on her chest wall. Do you mind speaking with her if I can send her over here? I am wondering if I can send a link to this page? Well, I will try. Is Xempra a pill or infusion? I hope it trests you well and kicks some *$$.
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Hope - so glad to see your post! Being bald in the city in August, seems like a good thing! I had a basket and horn on my walker. I just used some zip ties to get the basket on. I hope your PT, can help you move on to a cane. Good thoughts your way!
Inmate - I hope the new chemo is is very doable! Hope you can see it work on your skim mets in the very near future!
Tazzy - hang in there! I know Thursday can't get here fast enough!
Big boomers here! I managed to have enough energy to do some gardening today. I have a wrap porch with jasmine growing around it. I'm the only one allowed to trim it back. Hope I have the energy to finish it tomorrow. I want to do it now, but I'd be really pissed if I went through all that treatment, just to get struck by lightning on my front porch!0 -
I need some advice. Have any of you been given lymphedema exercises and not done them? Have you had any problems by not doing them? I've gone back to see my lymp PT to see if my lymph puddles are a problem. Of course she gives me more exercises to do and told me I must wear my mastectomy bra all day. OK, I say, I'll do it for a week. Never got around to doing exercises, but did wear bra all day for 3 days. Then I totally gave up. Wearing the bra is so uncomfortable for me after a couple of hours that I know that no matter what, I'm not going to comply. So the week is up tomorrow and I have to face her with my "failure." I have an US on Thursday and that is stressing me out too. I want so much to put this all behind me, but it keeps sneaking up on me. It's almost to the point where I want to curl up on the couch all day. OK, I'll put on my big girl panties and face the music tomorrow. End of rant. Jan
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Jan, I try to do my exercises, but my problem is in my back. I was trying to use a towel to go across the back but I just can't do it. Now I have been approved for a pump. I had a demonstration and WOW what a great response and feeling when I was done. Maybe look into one of these?
Here I sit still waiting for the results of my liver CT. Left messages with my doc Friday- no cll back- left message today, no call back.. REALLY grrr
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Lory - You have a lot more to be concerned about than I do. Insensitive medical providers make me crazy. It seems the more the worrisome issue is, the longer it takes for them to notify us. Sure hope s/he calls soon. Good thoughts heading your way. Jan
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