Calling all TNs
Comments
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Loving the laughs!
Annie - Woo Hoo! On making it to 1/2 way. I hope this one is an easy one.
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Doreen - LOL, I guess I really liked Mumbles!!! Yes, we did indeed! And I do have a few more days to document. Trying to fit that in with things like doctor appointments, chaperoning third grade field trips, attending DGD's dance recital and celebrating her birthday, and reading the naughty Fifty Shades trilogy
If I don't hurry up and get with it, my chemo brain will have scrambled the facts!LNBCA - I noticed some significant fatigue by the time I finished AC and started Taxol. I think I did the same protocol as your mom (DD AC/T) and I am 62. My energy level improved significantly even while on Taxol. And a few weeks PFC, I was much better. If your mom is anemic, ask her doctor about taking a pre-natal vitamin that has both iron and folic acid. I found that helped a whole lot. And make sure she's getting enough quality protein - I was told to eat 100 grams a day.
Congrats, Annie, on reaching the halfway point. It's all downhill from here!!!
And you and BernieEllen are just too funny! Thanks for the belly laughs!
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Half way there Cocker... what a feeling that must be.
Kellycbk - you will never feel alone here.
LNBCA - someone will sure to be here soon to offer some advice for you and your Mum.
Just watching our news... there is a beached hump back whale just south of Vancouver, place called White Rock. Not looking very good for the poor thing... high tide is a few hours away. Vet on site said whale in a very distressed state.
Enjoy your days ladies !
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LNBCA, I too experienced the shortness of breath and was a little anemic but don't have asthma. Walking upstairs was taxing. My MO said being anemic added to the shortness of breath. Since I was still able to get around, my MO did not seem that worried about it and did not prescribe anything. So, I tried to up my protein intake with things like smoothies with protein powder added. It seemed to help (maybe it was all mental). I also tried to get up and move even if it was only for 10 min on the exercise bike. They have these tx's timed so that when the body has recovered enough, it is time for the next one. Make sure your mom is drinking and eating enough too. Not enough can add to fatigue. With your support, I am sure she will get through this. Good luck!
CS, hope those girls bits get better soon! Yipee for 1/2 way done!
Had my bone scan and CT scan yesterday so waiting to hear the results. I got copies of the actual scans but who am I kidding, I don't know what I am looking at!!
For all you natural comedians, enjoy the jokes...keep them coming. I find myself coming here with anticipation of a good chuckle!
Great day to all with lots of positive energy!0 -
Beached baby whale is dead
seems caught in a fishing net whichi immobilized it. 0 -
Rachel, with respect to soy, the jury is still out on whether it helps or harms women with BC, ER+ or not. There are trials ongoing now, looking at the possible benefits of soy consumption. A few years back, there was a lot of stuff circulating about how it promotes cancer growth, but recent evidence has disputed that. Best to ask your doctor's opinion. In the meantime, here are 2 reputable takes on the subject... each suggests soy is okay in moderate amount from diet (not supplements).
http://www.breastcancer.org/tips/nutrition/reduce_risk/foods/soy.jsp
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LNBCA - It seems like your mom has a few factors which are causing the shortness of breath, asthma and the anemia. I understand from your post that maybe she has finished AC and is going to continue with Taxol. AC was really bad for my breathing. I have a CPAP machine due to a sleep disorder which throws forced air through your nose when you sleep. I swear if I did not use the CPAP after AC, I would have died. I also could not breathe. The day of chemo, I highly depended on my CPAP machine to sleep through the night and also just to be able to breathe. I am wondering if your mom gets the neulasta shots after the treatment. That is a must which brings up the blood white and red cells to normal. Once the blood levels are normal, one should start feeling good again. I would never take iron tablets on my own, it always should be supervised by a doctor. I had bought some, but never dared to take it. The medical staff need to pay attention to your mom, yell at them if you have to.
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Thank you very much for the replies everyone. It's about to come to that point Lovelyface...her onc's office has just been really out of the loop lately, and it's really starting to piss me off. I guess they would pay more attention to things if it were them dealing with this crap. Yes, she has just started her Taxol. I was hoping she would start to feel a little better with the Taxol, but so far she is still not able to do anything. And she's not the type to ask questions, or try and help herself to feel better. My aunt and I go to her appointments with her, otherwise we would have no clue what is going on. I am thinking of calling the office to see if a prenatal vitamin might help.
Lovelyface-is that a Doxie in your profile picture?
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LNBCA - I had to have a blood transfusion after 4 A/C and before my Taxol started. I was literally crawling up the stairs and felt SO faint all the time. My breathing was terrible and I was pretty well labour breathing at the least little effort just to try and get air in my lungs. The blood did WONDERS and I was able to finish the chemo. I also had a terrible cough (chemo cough) from the A/C as it burnt my sinus' and my sinus' were swollen so everything drained down my throat. The cough lasted until 3 weeks after my last A/C and then it just went away as my sinus' healed. I would ask about a possible blood transfusion. My red cells were at 82 and a normal LOW is 105. I had the neulasta shots but I was told those were just to help the white cells recover so you don't get sick. I never had an issue with my white cells. Good luck to your Mom
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Ok, we'll be sure to check on the blood transfusion. There is definately something going on. My aunt is taking her to get a chest xray this morning. That sounds a lot like her these last couple weeks, she literally can't walk through the house without needing to sit down or lay down to catch her breath. I can tell it's hard for her to even talk, just doing that takes a lot of effort.
Thank you again everyone for your replies. I appreciate you all taking the time to offer advice and well wishes!!
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SusieSue - that was a great story with a wonderful ending. Congrats.
Lovely - feel so bad for Robin Roberts, but she so lucky to have a sister who's a perfect match. I was told about the leukemia risk also but I didn't realize it was as high as 1:1000. Fiji sounds lovely.
Roxie - Welcome to the group. Very sorry about your Mom. Mags is right, ask away and don't be shy. No need to be embarrassed to ask anything, because someone here has had the same exact problem.
Borntosurvive- So nice to see you. Maybe because I'm older I've given up on the concept of "normal". I'm seeing people my age have strokes, heart attacks and just had a friend dx'd with Parkinson's. I guess my feeling is at my age, there is no normal for anyone, they're all dealing with trials and tribulations of some kind. For all you younger ladies, it just plain sucks!!!!!
Dormac - I SO HAVE some guys
to use that egg timer joke on!
Rachelvk - Nice to see you again, too. I eat soybeans but I'm not ER+. (I actually eat them because I like them). May I voice my opinion on something? (it's just my opinion, and totally respect that what you choose is what is right). If I was BRACA + , I wouldn't wait to get my ovaries out. Ovarian cancer is silent (no obvious symptoms early on) and deadly. I had a hysterectomy in my early 40's and wanted the doc to leave the one good ovary. She advised against it for two reasons. First, high chance of ovary going into surgical shock and being useless. Second, "why would you want to be walking around with a ticking time bomb in you"? At time I regretted the decision but now that I've been dx'd with TN (long story, don't know my BRACA status). I am so grateful to have had them removed.
Kelly - you are not alone. We'll always be here to twit and harass you!
OBXK - So jealous, have never had a chance to see Bonnie live. I used to play "Hear Me Lord" on my way to chemo.
Titan - that was hilarious, nice to know we "Rock on" no matter how old we get. When we get really old we can look forward to throwing our Depends onstage.
LUVRV - i'll be off to read your post, it's my vicarious vacation
Cocker - *hangs head and looks guilty*. Sometimes it's best to give people just the information they need, not all the information. Trust me if they lance it, it only hurts for a second, and feels immediately better because all the pressure is relieved. By the way, you ARE a much better patient than me. If some doc was in my "Girly bits" and started talking about lances, I don't think I could have resisted the urge to ask him, "and how big a lance would we be talking about
here"?
Tazzy - poor baby whale. Rads are a pain because you have to go everyday, but much easier than chemo. There is one thing I want to mention, that happened to me. My first visit the rad onc, explained that sometimes people's breast either swelled or shrunk with radiation ( I was not happy to get that info at that point, I think it should be presented to you before you make your surgical choices). I went from pre-surgical "you may have a small dimple or indentation" to a post rad breast that is two sizes smaller than her sister". It is what it is, but I just think they should tell you this in the beginning, not halfway through treatment.
LNBCA - LUVRV and Lovely gave you great advice. ( I am the opposite of Lovely though, I just started taking a small dose of iron when I was anemic. I'd still be anemic if I was waiting for my doctor to tell me).
It definitely sounds like your Mom has a combo of lung problems and anemia that compounds it. (less red blood cells = decreased ability of blood to transport oxygen). It sounds like they are watching it, because they did give her an antibiotic. I don't know which shot they gave her, there are two. Neulasta helps produce white blood cells, and Epogen helps boost red blood cells. I was pretty short of breath by the end of chemo, but it got better quickly. Make sure they are checking her blood values frequently. If she gets to low, they can and will give her a transfusion, but they don't do that till your blood levels reach a specific point. (and if she is so short of breath that she would consider stopping chemo, they may consider doing it. If you don't get what you need, you could also have a pulmonologist do breathing tests, which would show exactly how her lungs are currently coping. But again, anemia and shortness of breath are pretty much a normal with chemo.0 -
Good morning ladies...
Karen....I hope you are doing better today. It sucks to be so stressed. Just keep taking that Ativan for as long as you need them. I take a 1/2 from time to time just to mellow me out. I am hoping i can stop that as soon as these damn steroids wear off. I spent 12 hours in my yard yesterday just trying to wear myself out so I could get a good nights sleep. It worked!
CS.....I too had a boil show up towards the end of my Taxol treatment. I did sitz baths and that seemed to help. Definitely not fun, but it will go away. The neuropathy was helped by taking a glucosamine powder. Mine lasted a few weeks and I no longer have any lingering effects.
Minxie....I have so far had 10 different kinds of chemo so I wonder why the focus is only on the A/C T success. I would be more than happy to go into detail the whys and whats of each. Just PM me if you want more info.
Bak....welcome back! How are you doing post everything?
I was asked on Saturday where I got my hair cut. The whole question just threw me for a loop. You see I started to loose my hair just two days before my last chemo and had almost glued it to my head with hairspray to get just one more weekend out of a longer do. I just looked at the poor lady and said "Oh honey, this is after chemo hair. I got it done at Swedish Cancer Institute, it's kind of expensive". Poor thing. At least no one asked me when my baby was due. Ugh!
I belong to a fantastic women's group. We pick a charity a month and tonight we are decorating bras for an upcoming bowling for boobs event. We have done some very fun bras but this year with my lack of girls I was thinking a plain tank with "flat chicks rock" or a picture of the album cover from Head East "Flat as a Pancake". What do you guys think? Any other fun suggestions would be greatly appreciated.
Have a wonderful day! Love to you all!
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LNBCA I was very weak with chemo, like needed help to get to bathroom. My WBC was always very low one week post infusion. Oncologist always prescribed antibiotic. My RBC was always near normal which was hard to believe. I received ACT all at once x 6 at 3 week intervals. Usually I could get to family room about a week before next infusion. I needed a wheelchair to get from car to each station at cancer center. That was a year ago and today my only concern is recurrence.
I was stunned with Robin Robert's diagnoses. No one told me about this possibility. I understand she is triple negative too. She's such a dear person and I admire her greatly. I love how all the ABC news people gathered around her for support.
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Oh yes, Everyone: give me heads-up time to get my passport renewed. I ready to head to NZ and kick back with Cocker.
LNBCA I should have added that I was 69 at the time. How old is your mother?
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LNBCA - I am so thankful that your mom has you and her sister during this time, that is wonderful. My friend talks very highly about prenatal vitamins. She is 53'ish and buys them from Kaiser Hospital, over the counter. She said it helps with many of her menopausal symptoms. I hope it helps your mom. That is my son's precious dachshund in my profile pic. She is the love of my life, so cute, so precious. She showers all her love and attention on me whenever I am asked to go petsit her and two other dogs. I only had interaction with dogs when I was a child back home in Fiji, so had forgotten the characteristics of animals. Lately, I feel that I have reunited with my old love for animals.
Born - thanks for clarifying that neulasta only helps with white blood cells and not red blood cells. My treatment memories are fading away, since it has been almost 2 years since diagnosis. In a way it is good that my memories are fading, however, I don't want to give out false info. So thank you for correcting that.
Kathyrnn - Very good note on Ovarian cancer - a silent killer. A family friend is going through second round of chemo for that. She said the docs took a very very long time to diagnose her with OC the first time, as the symptoms were so unrelated. She was checked for stomach problems, put on antibiotics, colonoscopy etc. Turned out it was ovarian cancer, stage III. She was treated once, but now it is back again, horrible stuff.
Inmate - so good to hear from you. And I love your remarks regarding the hair......ha! ha! ha! I don't think anyone can understand the reality of it all, unless one goes through it.
OK Ladies, I have a huge scare right now. One thing is not over yet, another nightmare is on the way. I told you, it is non-stop. I am going to have my second biopsy for thyroid this Friday, so at least now finally I have the authorization and appointment.
For the last few days, however, I have been feeling that my BC breast nipple has been burnng. This morning I had ice in my bra, it was feeling so burned. And under my arms on the same side, I feel a lot of little bumps and lumps and pain. I am just so sick of this. I had to call my BS and ask the office staff to have her call me, let me know what to do. My 6 monthly MRI is due in August. Since I have those abnormal epithelial cells on the right side (non-cancer), I am supposedly a "high-risk" patient, so they give me MRI's every 6 months (or is it every year?). I dunno, but I am supposed to have one. Now I am totally freaking out about this burning. I am thinking, God, let it be the flax seeds. I was eating flax seeds with yogurt, as the cottage cheese was giving me stomach ache. They say flax seeds are very estrogenic. Maybe that's what it is. I am not sure what the BS will recommend. I am so so so very sick of my life, I hate seeing doctors, but it seems like I cannot live my life, without having to see so many of them, one after another, week after week.
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Inmate - what a hoot! That poor lady!
I love the thought of the decorated bra event! I'm thinking oval tissue boxes, stuffed in a big bra, with holes for the tissues to be dispensed. Cause cancer is a crying shame.
Hope every one in treatment is having a "good day".0 -
Lovely - big hugs!
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LNBCA, I had significantly reduced breathing during chemo. I can remember being hardly able to walk around the yard, or even stand up for many minutes on some days. It gradually got better after chemo. Studies have come out recently saying the Ginseng may help with cancer fatique, though I think it takes a while to build up a significant effect. http://www.medpagetoday.com/HematologyOncology/Chemotherapy/33086
http://www.breastcancer.org/tips/new_research/20120611.jsp
I felt that accupuncture helped some, and walking (when possible.) You are a loving daughter!
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LNBCA - You are great to be watching out for your mom like that. I hope some of the answers from others helped. I did TAC x 6, and by the last one, I had to stop once or twice to make it up the stairs to my apartment. I even applied for and got a handicap permit, and I'm only 43 and (prior to this) in good shape. It must be harder as you get older. I hope the doctors can find some ways to help ease the fatigue and deal with the anemia.
Luah - Thanks!
kathymn - The ovaries are definitely going, and sooner than later, but I just want a breather. I just hate the thought of hitting menopause (assuming chemo didn't put me there already). I'm barely 4'8 and have a history of osteoporosis in my family. Ovarian cancer would be worse, no question, but I'd like to put off some of the SEs of an ooph a little.
Tazzy - That's so sad about the whale.
Inmate - That was a fantastic answer! Wish I had thought of that when a few people asked me a similar question (although in that case, I had my wig on).
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Lovelyface - So sorry to hear you've got another worry weighing on you. Sending you good vibes for the biopsy and this new issue.
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hey rachelvk- I finished my treatment in Sept. 2010 and as soon as posssible I got a total hysterectomy. I was not going to take a chance that I would have to begin new treatment anytime soon. I am BRAC1+ and didn't want to give C a chance to start there. I would highly recommend checking into getting it done robotically. I was in the hospital under 24 hours and feeling normal in less than 4 days. Definitely much better than being down another 6-8 weeks.
inmate- love the HAIR!! I don't have that kind of quick wit. The bra event sounds like great fun.
To all you out there facing treatment take it one day at a time!!
Kelly
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Inmate - 'Gone but not forgotten'. I had a doozy before I went in to get more chemo brain so hopefully it will come back to me later.
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Lovelyface....I hear you on catching a break. I even find myself avoiding that part of town unless I have an appointment. No need to be reminded by shopping in the neighborhood I get treatment. I am hopeful this is our summer for a break from the action!
Karen....I love that idea. I just found out tonight you can buy a box of extra underwear. They are dispensed like tissues. That of course would not apply to this event. I just thought it was funny.
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Here you go Inmate just for you. Aren't they beautiful
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This one just cracked me up
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Good Evening Ladies
Hope everyone is feeling good with no side effects.
Dormac - would you get that wheelchair up the Eifel Tower??
Riley702 - right got it, medical oncologist but what does the initials JMHO mean that Titan mentioned in her post. We don't have those neulasta shots here either, or I've never been given one. Isn't it funny what different treatments different countries come up with. You would think for the good of the patient they would all be across the board.
Tazzy - what a shame the poor little baby whale died.
StayShiny - wishing you good results on your bone and CT scans. Will be thinking of you and hoping all goes well.
Luah - I really hate soy and couldn't eat it if my life depended on it. Yuk.
LNBCA - good idea for you to call the doctors office and also perhaps get her heart checked as well as see about a blood transfusion. Just a thought but something has to be done for your poor mum. She is probably so scared of this diagnosis and all that comes with it.
Kathyrnn - Might have known you would keep stum on me and not tell me all. The onco showed me a picture of the size of the boil and how big the cut was. I thought what for down there, get real. I'm sure I went pale.
I agree with you on the ovarian issue. It is called the silent killer here too as the symptoms don't usually show up until too late so out the bloody things go. Mine will as well if I prove to be BRAC 1 or 2.
And OMG - shrunken rad breasts. Do you mean I went to all this trouble to try and look normal with a prosthesis and now I might look lopsided again. Your joking me right??
Karen - new clothes aye. Bet you look spiffing in them. By the way did you receive a parcel today with no return address on it???? Will explain more about HER later.
Inmate - did you put salt in your sitz baths as they say it heals. Also the boil is starting to happen cause I had some blood today which I remember having with the other boil many moons ago.
Could you also put the why's and what's about AC and Taxol on here cause my Onco also said it was the best treatment for TN's today when I saw her today.
Bet you will have fun decorating those bra's. I would love to see what you all come up with.
Well ladies I'm ashamed to say it happened again and she ate the new box of band aids that my old fellar brought. They also was on the bed cabinet because thats where I lay on the bed and he puts the bandage on. Cause we were running late for treament and had to rush to chemo (God knows why) and when we got home, all chewed up. The old fellar said little sod isn't she, I thought thats not what I call her. It was my fault though cause I should have known not to leave them there twice but I could still kill her. When you look at her she has the most sweetest face and she is so tiny. You would really think that butter wouldn't melt in her mouth but bloody band aids do.
Everyone raved over the butterfly cakes and scones that the old fellar took to chemo today. His chest is still puffed out. Must admit they were nice though.
When I got home I had a huge spray of flowers delivered from my workplace saying " half way there, you are awesome". They obviously haven't read my posts on here about chemo. They are all orange with beautiful fern and pretty paper, so lovely and made my day.
Have a good day ladies. Sending you lots of hugs for any SE's and lots of love. Annie
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JMHO-- just my humble opinion
Tried something different for my LE in the left arm yesterday. I wore the sleeve on top of the glove instead of the other way around as directed and last night I did not wear my compression garment at all...naughty gal that I am. Guess what? The hand looks better today...go figure. Apparantly my hand is a rebel like me! It still is puffy looking but I can see two ligaments today as opposed to none.
Horray for OKC last night! Even though I live in Florida I am not a Miami Heat fan.
Maggie
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Mags- I have LE in my hand also and last fall, I went to the LE therapist and did the LE massages. She tried "wrapping" my arm and hand and my hand got worst with the wrapping! Now I only wear my sleeve and glove during the day and I have to say that it's stable. It's still a little "puffy" but I will live with it. I hated the wrapping. I tried all sorts of sleeve and gloves. I noticed that when I wore my Lymphediva sleeve my hand got puffyer because the wrist is tighter. I tried the Jobst armsleeve and seemless glove and didn't feel comfortable in them. The best for my is my Mediven 95 armsleeve and glove. I wear my sleeve on top of my glove all the time too and works well for me. I have truncal LE too and have to wear a compression bra too. Let's just say I am very well compressed.
Just too add that my shingles are still going on. It's limited in my right shoulder and base of my neck, BC side. I am lucky it doesn't touch my arm because it would be hell itching and having to wear my sleeve! It doesn't hurt too bad so that's a good thing but it itches like crazy!
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Mags: When I attended an LE clinic, it was my understanding that pressure sleeves were only to be worn during daytime hours. But maybe that depends on the LE patient. (I only wear mine as a precaution when I fly.)
Lovely: Sorry you're dealing with all this. Stay steady... the symptoms might just go away on their own in a few days.
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