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Comments
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SammieKay - thanks for thinking of me today. I have not been feeling so well, as seems to be the norm for many after AC#3. I've been in bed most of the day, and I just feel - BLAH and YUCKY! I did manage to get bath in to wash off all the chemo-residue (maybe its just in my mind) and I changed my sheets. My MIL is here to help out with the kids - I am so thankful. DH was complaining about a headache today - I told him he has no idea...
Palms and Vegas - welcome - this is a great thread to be on. These ladies give so much support and I love the way they "keep it real!"
Palms - my AC regimen sounds similar to yours. This time in addition to Aloxi and decadron in the IV, they also gave me tagamet for heartburn. I take the Emend for 3 days, as well as, decadron pills and I take Kytril pills. I also have prescriptions for compazine and ativan as needed. I suffered with pretty bad morning sickness with both of my pregnacies so they figured they should pull out all the stops. So far, I tend to feel queasy the first few days, but like others have said it's the fatigue that really gets you. I find with each treatment I just feel more tired and for longer with the AC.
Vegas - I am also having problems finding things to drink, as everything tastes bad. I've tried all kinds of juices and sodas, seltzer water, plain water - nothing tastes good to drink, but I try to keep hydrated anyway. I found that popsicles aren't too bad.
Marsha - I have the same question you have about periods, as I am pre-menopausal (I'll be 38 tomorrow!) and I have not had one since AC#1 four weeks ago. I think the onc told me that chemo could stop them, but is that the norm? Will it come back? I am actually happy not to see it, but just want to know what to expect.
I will be paying very close attention to those of you moving on to DD taxol or taxotere (not sure which) over the next couple of weeks. I have one more DD AC on 4/12, and like Catherine and Marsha, I don't know if I could take any more of the "red devil" - just the sight of it makes me want to gag!
Carryn and Karen - I'm glad it's the last of the AC for you both. Hang in there, as I will be right behind you the following week. Carryn - I agree that it is amazing how you pull through at work. I am just happy to be on FMLA, so I can take days as needed. I'm also lucky to have an understanding boss and co-workers who have been really supportive.
Hillary - glad you are feeling better after AC #4 and that after a hard few days it is not lingering. I am hoping to be as lucky, as #3 has really got me bummed. I am really going to try to get myself up and going for my birthday tomorrow - more so for my family than myself. Maybe I'll have them take me out for some fresh air, as I think a nice dinner at a restaurant will be out of the question!
Catherine - I'm glad to hear you are feeling better with the Neulasta pain and I hope your port issues subside soon. Glad you were able to get out for a walk.
Sybil those wig stories are great! I am not sure whether or not people can tell mine is wig or not. When I consulted with my radiation-oncologists she seemed shocked when I pulled it off during the examination, so I guess it at least passes.
Jen I have now learned my lesson with my meds, so I will try to remember to call them in and pick them up the day B4 treatment so that any insurance type issues can be resolved. It was way too stressful to deal with the day of treatment.
Regarding the front desk chicks I believe that my doctor got on their cases because they were much more polite when I went in to get Neulasta on Friday. Good thing because I was ready for them. There is no way that they should be upsetting any of us with everything we have to deal with!
Okay I have gone on for a long time today. I had to copy and paste to make sure I didnt lose it all! I just needed to exhale after laying in bed all day.
Take care all!
Steph0 -
Carryn - that is a very touching story. Thanks so much for sharing. It really hits home with me, as I really didn't think that I had anything to worry about when I discovered by lump, but I had it checked out anyway.
Steph0 -
Thanks Carynn for sharing this touching, inspiring story.
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Great story, thanks for sharing Carynn! Good to read everyone's updates. Today (Saturday) was a good day. I usually don't feel THIS good just 2 days out of chemo...maybe cuz it was the last of the AC that I celebrated by spending the whole day out shopping, and visiting.
It started this morning at 9:30 with a knock at my door. It was my aunt and uncle (she's only 4yrs older than I at 54) with a surprise visit. She was carrying a pretty pink cotton scarf with a sign pinned to it that read "In Celebration of Patsy" (what my aunt calls me). She had just taken part in the Susan Komen 3k race for the cure in my honor! What a wonderful thing for her to do! The sign was what she wore pinned to her shirt as she ran and when she finished she recieved the scarf to give to me.
So that started my day off in a great way and we visited all morning then my daughter and I went shopping then had lunch with my sister and nephew then on to a cousins house for a while then back home. WHEw....I was tired at then end of the day and a couple of episodes of queasiness but not unmanageable. That was probably the most I've stayed out of the house since this whole thing started!
Well, that's my story. Take care everyone!
Pat0 -
To avoid the drive to my onc's office the day after chemo for my Neulasta injection, I got my ins. co. to okay me getting the medication from my local pharmacy so I could administer it myself.
I took the Rx into the pharmacy today so they would have plenty of time to order it for me to pick it up Tues. I came home late in the day to a phone message from the pharmacy. It went like this:
"The medication costs $3,487.50, your co-pmt. is $455.00, do you want us to go ahead and order it for you?"
I called them and said, "I don't understand. When I get my injection at my onc's office, I pay a $35.00 co-pmt. Why would it be $455.00 for me to inject it myself?"
"I don't know, Ma'm, I checked with your insurance and here your co-pmt is $455.00. Do you want us to order it for you?"
I said, "No". Now I have to figure out this crazy thing. I will be making a phone call to my onc's office first thing on Mon. and then, based on what they say, to my ins. co. Problem is, the pharmacy says if I wait to have them order it on Mon., they won't have it until Weds. which will work but wasn't how I planned it.
Does this make any sense to any of you on this cruise? Can anyone clue me in?0 -
Hi, all, I have enjoyed your long posts... and Carynn's story which is very moving.
SammieKay: "my" Chapel Hill is the one on the road to Brenham...
To address a few recurring themes: premeds -- for AC, I had to take Emend the morning of chemo (when leaving home) + lidocaine cream on port, then one Emend day 2 and a 3rd one on day 3. In the IV I got Aloxi +decadron (no idea of the dosage). No decadron at home. I take one Ativan at bedtime (the compazine is in the refrigerator, suppositories, did not need it so far; same with Kytril: did not touch it yet). Maalox helps, peppermint gums, ginger tea, anything minty... and... yogurt (lowfat, plain, no sugar no fruit)... yogurt is my best stomach medicine.
Periods: After a pre-menopausal year (hot flashes, night sweats, joint pain here and there), I was back to a pretty regular schedule (and no more symptoms) for the last 3 months before dx and following surgery. After 1st AC, no more cycles, and the hot flashes/night sweats are back... I'd venture to say, this is my main source of discomfort right now... but this comes with the territory of being 54, anyway...
At the onc center I go to, they run blood tests just before we get our tx (not in between). This time, I do not know whether that was planned or they did it because I asked for it, but they ran a complete pannel again (liver, kidneys, electrolytes): everything was still completely normal (which amazes me considering the toxic crap we've been subjected to...)
I am slowly getting out of the Neulasta symptoms (I must say, I did not take any Advil nor Tylenol for the discomfort since I was starting the antibiotics for my port incision, and I did not want to overload my system).
I went for a long walk with Toby, and baked a pear pie + a spinach/chicken quiche for tomorrow's lunch... thank you WF for the ready to bake organic crusts...
And now... time to go to bed...
Have a lazy, comfy Sunday...
Hugs to all. I enjoy the posts of our latest recruits on this cruise...
CatherineH0 -
Sybil, that is why I have mine in the dr's office. I could easily give the shot myself having given a few thousand over the years. But hey remember my bad insurance? It costs me $300 every time I get one in the office-that is my co-pay. Funny, same drug here lists at $5,000. If I got it from the pharmacy I would be paying 20% co-pay for a script-$1000
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Hi everyone
Have spent a long time reading all the posts. What great stuff especially the last story.
Please make a reservation for me for Thursday ( hopefully my bloods will be fine as I nearly missed oyt last time.)This will be my last FEC, Then it is on to Taxol.I have so many questions for the onc when I have my assessment on Wednesday. I don't have the choice of Taxotere unless I wanted to pay for it myself. I am lucky to be getting Taxol. Here in New Zealand most people go through the public system. Taxol was released for early stage cancer last September, taxotere is still on the restricted list. My surgery was done privately - much quicker that way and it meant I got on to the chemo list very quickly. Insurance won't pay for chemo so most go public.
I had little choice about people knowing my dx. My daughters immediately got on the phone and informed evryone they could think of. This was so I didn't have to tell people myself especially as I was involved in Christmas preparations at Church and it was something they could do. DH told a few people but didn't go out of the way to do so. I sent a message to all my staff at school to tell them what was going on and that I would be back as soon as I could. A couple of days after returning to school I realised most people didn't know and were wondering what was going on. As I had told each of my clsses I thought the staff should also know. So at morning briefing I decided to speak. Briefing can be great fun wit lots of laughter. The DP who was running it guessed what I was going to say and left me until last. Somehow I got up and told everyone, said I was starting chemo and to wait for the wig. Had the most incredible reaction and lots of support. Many of the women have come to me and said that they were off for a mammogram, other staff have told me about wives and mothers. Now another staff member has a re-accurance of BC and she emailed all staff to tell them. If we can get one person to have tests etc and help prevent this then we will have achieved something. I will certainly be promoting BC week which is later in the year. Now I just have to get my good friend to go for a mammogram as she says its a waste of time as they have told her that her breasts are too lumpy so won't show tumors??? I am trying to convince her to go private.
Vegas, hope all goes well for your next chemo.
Catherine how is that infection? And Sybill loved the tale about the wig. I managed to lose mine when I ws being fitted for my prothesis - I must have looked a sight, a bald headed, one breasted thing. The young woman doing the fittings wasn't the least concerned.
Marsha - I don't associate the taste/smell with the red liquid it is one of the clear ones I get that turn me right off everything.
To everyone else I hope you have a great weekend and have managed to get a rest. I must do some work before school tomorrow. I also have to wash my wig.
Will be thinking of everyone as they go to the bar this week.
Alyson
ps luckily I copied that posting as I would have lost it.0 -
I, unfortunately, (not knowing any better) have an HMO for my insurance. They were unable to provide a PS to do surgery before March (I had my surgery done the 11th of December) and even so they denied my preapproval to have my surgery done out of state! I couldn't wait (duh!) to get the cancer out of my body, so now I am fighting with them to cover the cost. I had THE most amazing doctors in the world, and they did everything they could to cut their bills down and even talked to the hospital as well. Even though we might end up paying for it ourselves, I would do it again in a heartbeat to get these doctors as it turned out.
Anyway, my Neulasta copay is $1625! I was shocked!! I asked the oncologist what they did with people who could not afford to pay $1625 and she said they just monitored them and sent them to the hospital if their white blood counts got too low. When I get through this chemo I am going to make it my mission to go to every large customer of this HMO (they do almost all the union stuff here) and let them know how horrible this insurance is! I would do anything to change, but of course now I am stuck with them until I am at least 5 years NED.
I had thought I was not going to tell anyone when I was diagnosed except my immediate family, but then all of a sudden I went to the exact opposite extreme, making sure everyone knew. I emailed all my coworkers and friends, begging them to make sure their wives, mothers and daughters had regular checkups and telling them my story. For me it was much easier emotionally to let everyone know before I saw them again. I have been truly blessed in my friends and coworkers - they have been way more supportive than I ever would have guessed.
I have been pretty much of hermit since the whole thing started though. I prefer to stay home and not have to deal with pretending to feel better than I am in public. And it is much easier to nap at home than at the office!
Since the weather has gotten nicer I have been taking my laptop out in the back yard as well.
I have two particularly funny stories to date to share. One is, of course, a wig story. I got four different wigs, and two of them were very similar to my "real" haircut, just different colors. I was sitting at the office at the computer, when one of the managers from another branch came in just to say hello. He knew of my diagnosis, but I guess hadn't really thought about the hair thing. I was finishing up something and as he stood behind me he decided to stroke my head. Imagine his surprise when the hair moved with his hand!!
The other was just about five days after my surgery. I had gone the bathroom in a restaurant and had dutifully left my purse with cell phone with my husband, because I was not supposed to lift anything heavier than a coffee cup as per my PS. (My purse could normally also double in a Scottish hammer toss.) I went into the bathroom through the nice push door, but getting out was another story entirely! The door was extremely heavy and there was no way I could open it. Unfortunately we were there kind of between lunch and dinner in a pretty dead time and no one came in or out for over 20 minutes. Finally my husband, realizing what must have happened, sent a waitress in to rescue me. But he didn't explain why and she must have thought it quite odd to go into the restroom only to have a perfectly normal woman thank her profusely for opening the door!0 -
Vegas - funny story about the door! How awful!
about menopause - I was premenopausal before dx - my onc said I would definitely go into menopause with the AC - but that the side effects from that could actually be as bad as from the AC! (she was kidding!)
The day after my tx #2 - lucky me - got the monthly surprise I was NOT expecting - what an awful week it was! But my onc said it would be my last, so thankful for that! However, the night sweats have appeared. Almost every night - wake up nearly soaked! AWFUL! But I can handle I guess - moodiness has been the other issue. Although not sure if it's from menopause or the AC!
Well, I 'm sure that a few of my neighbors will be findin out what's going on with me soon. With the weather warming up - and putting our house on the market - I will be working outside to "pretty up" the yard. I will NOT be wearing my nice little HOT wig either! I normally pulled my hair in a ponytail and had a ball cap on (working with horses a lot!) so everyone is used to me in that - and that is what I will be wearing, but there will be a handkerchief instead of hair! Sweating will be less that way I'm sure! Guess I will have to handle others knowing! But yes, I will also increase awareness - which is the best thing I could do!!
Jen0 -
Hi all miss me????
A?C was rough think I told you that. Well #2 was great no nausea, no side effects, until day 8 started running a fever again. By Monday night it was the proverbial 101. Called the Doc and DH had to make the midnight run for more drugs. Tuesday I had to go in for blood cultures and IVs. They sent me home and said to call if I got worse .fever jumped to 102.9 wonderful. The doc called and the bacteria culture was not good. Gram positive rods .blood infection ..into the hospital for IV antibiotics. I was feeling really awful on Wednesday, but by Thursday day I felt almost human again .but then they told me I was getting a roommate as the hospital was very crowded. I thought ok. This is a cancer ward we can suffer together. Well they brought this lady in and she was only two years older than me. She was coughing like crazy and didnt know where she was or who she was. I really begain to get scared. I tied a scarf over my face as I had zero immunity at this point. Finally her son came and informed the nurse that she wasnt doing very well REALLY!!!! Anyway he told the nurse he couldnt stay. GREAT. Well I am in a panic by now and wide awake> About 1 am she started choking real bad and I called the nurse. They all came running and got her fixed up. I was so scared she would die I stayed awake all night listening to her breath sounds. I practically had my finger on the call button. I heard the nurses talking and the said whe probably ahd a port infection as her port had been in for three years and she got some type of chemo every day .probably because she could not swallow pills. By morning I was a basket case. Luckily my doc came in at 7 and I explained to her that I could barely handle all I was going through right now and did not need the pressure of worring whether this lady would die right next to me. She could not believe they put her in there. Anyway I was told I would have a private room by 10:00 am. At 8:00 am another son had flown in from seattle and was trying to communicate with her. She could not even talk. He was a doctor also, though I dont know what kind. He started calling family members and I knew this was not good at all. Well I decided this was not the place for me. I had the nurse unhook me from the IV and I spend the next couple of hours doing the marathon walk in the halls and memorized all the paintings and bulletin boards. I was not going back to that room period. Well they finally transferred her to ICUabout 9:30 and I was moved to a different room at the same time. The nurses were so wonderful during this time and gave me so much support. I felt a little like I was their special patient that morning. The rest of the stay was uneventful and now it is Saturady night and I am home finally.
My dogs were so glad to see me, they stayed by my side all night.
Pending no problems I go to the bar on wed or thurs for #3.
Im finally caught up on all the posts now but Im tired and ready to hit the bed.
Good night all and pleasant dreams tomorrow will bring sunshine
Patti0 -
OMG Patti, yes we have been worried about you and for very good reason it seems. Bless your heart! Glad you are back home and away from all that trauma. Do they know what caused the blood infection?
Came on here this morning and there were 22 posts and have gotten all caught up with everyone. How odd that #3 is worse than #4. Not complaining but how odd. #4 left me with a little more "empty stomach" feeling. Hard to find something that sounds good to eat but was naseaus if I had an empty stomach. Finally settled on Butter Pecan Ice Cream and had that for dinner Friday night. Managed steak and shrimp last night (yummy) and am going to the theatre for a matinee today to see my friend Laura in a show. (Sitting in the audience is NOT easy for me)
About telling or not telling people, well you guys know me well enough by now, bald is beautiful and the people are SO nice to me (except for the desk bitches, they must be immune to my charms). My brother suggested I put on a scarf when my parents get here next week. LOL I told him I sent pix for that very reason! And that if anyone is embarressed to be seen out with me bald then maybe they should wait and visit when I am back to normal. Why are we suppose to be embarressed? OR uncomfortable? I am not "catchy" for gods sake. Oh well, can't be bothered by all that.
About the pre-meds, I have never been given anything to take before tx. I get everything in the iv before the chemo. No pills before or after except for the compozine or kytril for after. Also, having a few hot flashes too but that beats the hell out of cramping and flooding! LOL BTW was just kidding about cleaning the house for the parents, that is DH job to do!! And he does such a good job of it too I am very lucky. Have a good day everyone! XOXO Marsha
NICE story Carynn!0 -
Hey Vegas, Are you / were you on dose dense AC when you had the neulasta shot one week out? Just curious, not that I can do anything about having missed my appointment. I'll be in there first thing tomorrow morning.
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Hmmm....on the subject of menopause...
Perimenopausal is defined as the time in a woman's life, pre-menopause, when her cycle becomes irregular. I was not perimenopausal before chemo. I am 50 though and since the typical age of onset of menopause is 52, I'm sure I would have moved into the perimenopausal phase soon.
Since the start of chemo, I had one cycle on schedule then another two weeks later. Obviously off schedule. I'm not sure what to expect next.
Amenorrhea is pretty typical for women my age undergoing chemotherapy so I won't be surprised if I never have another period. I can do without the hot flashes and night sweats, which I don't currently have to contend with.0 -
Welcome Palms.
I'm on DD AC and DD Taxol or Taxotere (need to figure this one out before the next treatment -- onc is leaving it up to me
). Had my last AC last Thursday. I get Decadron and Aloxi via IV before the chemo...nothing else. I am fortunate though, I have not had to contend with serious nausea issues. Everybody is different and I know some of the other women here struggle with this SE. I drink plenty of water all the time and ramp it up jsut before, during and after the actual chemo day. I have changed my diet since I'd been following low-carb for several years. I now am sticking with a very low-fat diet (with only the occassional treat), lots of fresh fruit and veg, whole grain breads, etc. No alcohol to speak of. Three meals a day and lots of healthy snacking. Despite this, I continue to lose weight...down a net of around 6 pounds since my Feb 15th chemo start. I take Ativan most nights just for sleeping. I don't know if it helps or not but I'm afraid to stop. I don't take it at all through the regular day. I also take a multi-vitamin and several supplements...folic acid, flax seed oil and now glutamine (for the potential peripheral neuropathy SEs of Taxol).
There's quite a lot of material out on the web regarding the positive effects of exercise, low-fat diets, etc. on reducing the risk of BC recurrence. I'm trying to do what I can without obsessing.
Glad you found us Palms. Sorry it had to be for this reason.0 -
Oh Carryn...that's wonderful. Brought a tear to my eye. Can I steal it for my blog? I'll give you credit.
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Sybil,
I asked about administering the neulasta shot myself instead of going in to the onc's office each time. I was told that the copayment would change because I was not using the techs in the onc's office. I was also told that some insurance companies simply will not cover the cost at all unless the injection is done at the office/clinic. Go figure. You'd think it would be cheaper!0 -
Hey Steph,
As I understand it, your menstrual cycle is more likely to return the younger you are. Since you're only 38, I'd bet you'll be okay...it'll come back (if that's a good thing).0 -
Good morning all!
Oh Patti, how awful! I do hope that you are feeling better and that the next tx goes well.
Marsha Im all about the hair at work, and the scarves for day to day running around, but youre not! Dont you DARE put one on!!! Speaking of scarves, one of my best friends bought a new Harley last weekend. I had always called this model MY bike and showed it to her. The difference is she actually rides.
Anyway, while at the Harley dealer she picked me up two awesome scarves that I will continue to wear somehow when my hair comes back. One is just a cool HD scarf from the local dealer, and the other is covered with Swarovski crystals, its beautiful!!
Twink my Onc said Taxol but since the two taxanes are sister drugs, I did research to see which one I wanted. At first I was leaning towards asking for taxatore, but Ive since changed my mind. I didnt bookmark any of the pages, so if I can find them again, Ill post the links here. BTW, of course you can post that email on your blog!
Ahh raceday. The day that before chemo we were couch potatoes, right Melanie?! Have a great Sunday all.
Hugs!0 -
hope you feel better...chemo sucks! about the period thing...i was 38 when diagnosed. mine stopped entirely during chemo and came back one year to the day after my last chemo treatment! i was so excited to be getting back to normal...never wanted a period to come so badly. my onc says most women under 45 get it back. good luck with the taxanes. I did Taxotere and while AC was tough, I had one hell of a time with Taxotere. Had all kinds of strange side effects, but then some women do not get much so you just never know. I know this is hard to believe but it will be over before you know it.
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Wow -- lots of posts and long ones!
I'll weigh in on my menstrual situation, since everyone else seems to be. I was 48 at diagnosis, and still having very regular cycles. My onc told me that I'd probably go into menapause and not start again. I did have one normal cycle that started one day after AC#2. The next one is due any day now, so I'll let you know.
I was offered the opportunity to get my neulasta shots at home, but declined. First, I didn't think I'd be able to give them to myself. Second, I had already arranged to have different friends drive me in for the appointment. Finally, I had a feeling that it would cost me out of pocket. Any drugs given at the oncologist office are paid for by insurance company with no co-pays. Any drugs that I get from pharmacy have co-pays, sometimes quite high for non-generics. Sounds like I made the right decision, given the problems some of you have been having.
By the way, are folks still getting neulasta during taxol? I asked my chemo nurse (forgot to ask onc), and she said that my oncologist wants neulasta during taxol but not all oncs do.
Palms -- I don't have much more to add from all the wonderful advice you've already gotten. Now that I'm done with AC#4, I can say that it is doable, though it doesn't feel that way when you are in the midst of it.
Karen -- We have a Wellness Community here as well. I went to their orientation session, but have not been able to take advantage of any of their programs yet -- feeling too crappy or the times are bad. They have some interesting ones on cooking healthy that I'll try post chemo. Also, their excercise classes might be a nice way for me to start getting back to normal, again post chemo. I'm so sorry about your nausea. You seem to have it even worse than I did. And, I have been lucky about having no pain from the neulasta.
Catherine -- I forgot to ask how your port infection was doing? Is it still red? I love that you can still cook such wonderful food. On my "good days", I salivate about food, but still don't have the energy (or stomach) to do much cooking!
Marsha -- Glad to hear that dh was doing the cleaning!
Carynn -- I agree, you are so luck to have such a supportive group of folks to work with. But, it's probably because your such a wonderful person! I also loved your story ...
SammieKay -- Glad you liked the post about kids-- it's fascinating to me how different kids respond to this. I'm about the same age as your daughters! Please encourage them to get MRIs. I was lucky to find my lump, as it was missed by mammo done six months earlier.
Steph -- Take it easy from work if you can. It's important to save some energy for your kids. My son is really appreciative of anytime I can spend with him, and it would be a lot less if I was also worried about work and work-related issues.
Pat -- I know how you feel about being surprised about feeling good after chemo -- I think it's the last AC hurrah adrenaline thing!
Alyson -- That's great that you were able to be so positive to your school and to encourage others to get checked.
Patti -- Glad you're feeling better, but I'm so sorry that you had to go through all that. Make sure to update us ...
Twink -- I wish I could be as good as you and eat a healthy diet, but I seem to gravitate to carbs! I had been losing weight initially, but now I'm putting it back on, probably due to the decadron. I hope to do more healthy eating on taxol, as my onc promises me it won't give me a queasy stomach!
OK, I'm sure that I've missed a few folks, but I'm still thinking of all of you ...
-- Hillary0 -
Steph, Happy Birthday to you on this 1st of April, wishing you to spend it without the "blahs"...
I Hope the front that brought havoc to so many communities these last 2 days has not affected any of you... All we got here from it is some fresh snow that has disappeared by now and it is a glorious spring day out there, so I will give a call to my sweet neighboor to go for a long walk together.
Patti, sorry to hear about your complications (do you know the source of this infection?). I dread this, which is why I went in last Friday to have my port site double checked (reddish and looking worse than on Tuesday... I hope the antibiotics will keep the starting infection at bay... no fever so far...). Wishing you a complete recovery before the next tx.
Alyson, your long post is very illuminating about health care... and all the insurance stories, too... I still do not know what happens with mine because I am "in review"... there is not much to review since I have no medical history prior this dx... I understand it is a game with providers to pay them as late as possible... I must say, I can't believe how unfair and unequal the system is when I read your posts... I also understand that you have to fight to the last penny if need be... scary and appallingly inhumane and deprived of basic compassion and decency... we are not talking of sore throats, here... I'd like to know whether those "decision makers" claim, otherwise, to be good christians or tenants of any faith or belief system that promotes compassion and fairness toward other human beings...
Well, time to go...
You all have a lovely Sunday...
Hugs to all,
CatherineH0 -
Darn...I am sooooo far behind. I have lots of catching up to do!
Vegas; I would love to know more about your one step reconstruction using Alloderm. I actually started a thread here about that subject. My recon is delayed until after chemo and I am trying to figure out which doctors I will setup appointments with to discuss the procedure.
Patti; I had a similar situation in a semi private hospital room during my mast. It was very scary. My BS let me go home at 7am the morning after surgery because of the concern and there not being any private rooms available.
I am confused now about dose dense. I thought I was DD. Most everyone here knows that I am doing taxotere, epirubicin and cytoxan every 3 weeks. After researcing, I read that the dosage for my regimen is not reduced if I were to do it every 2 weeks, and that would be considered DD. Supposedly, the cells do not have the time to "recoup" if done every 2 weeks. I have to ask my onc about this.
Next subject...my cycle has always been very regular and short lived. Dangit now...I am still on it now and it is day 11!!! #3 has really put my body into overdrive. I, like Carynn have an annoying irritated throat. Dasani water was my main drink, now it tastes yuck. I am drinking lemonade and really like it.
Carynn; Almost time for the race to start! One of these days maybe you can make a visit to the Texas condo. I know you would love it!
Happy Birthday Steph! Thanks to Catherine for the "reminder".0 -
Wow! I was initially annoyed with my insurance company because they would not pay anything for a wig. However, after hearing all of these stories, I don't think that they are so bad. I can get online and check out their reimbursements, and so far they are paying for almost everything related to my diagnosis, lumpectomy, chemo, etc. I do need to get pre-approval through my PCP office, but I found a nice FDL (Front desk lady) when I was first diagnosed who gave me her direct phone number to call if I ever get stuck.
Melanie -- I think that if you're doing three drugs they do it every three weeks. It would be a bit much to do them all every two weeks!
Catherine -- Glad you're finally seeing some Spring weather. We're definitely moving into spring here. Tomorrow, it should be in the 70's. In between the predicted rain showers, I'll try to take some gentle walks!
-- Hillary0 -
I received neulasta with 3 of my 4 taxol treatments. I didn't get it with the last one since my onc thought that since my chemo tx were over my white blood count would go up.
But as we know, all onc's do things differently.
Melody0 -
This thursday my dh and I leave to go to Omaha, NE to see our son. So this is going to put me behind 1 wk for my last tx of a/c. My last one will be on the 12th. Spoke to my son other night on the phone and told him my hair is shorter than his now and I might even paint a smiley face on it before I see you. His response was don't you dare. Hmm. Onc had told me last visit I would be crazy to opt out of taxol but it is my choice. We agreed that we would stop if I showed any signs of neuropathy. I am so paranoid of it. I need to mention to him though I am allergic to bees and wasps. had forgotten to mention this. Saw someone else had posted this could be a problem but don't understand why.
Can anyone tell me if you take the shots with taxol now as well as emend?
good luck to all that are visiting the bar this week.
Piper0 -
Happy April Fools day...I was hoping this was all a bad joke and would be gone today...but alas!
I wrote a long post this morning, but it got lost in cyber space...so I am going to try and reconstruct it..
I have been post menopausall since age 41..will be 48 on the 13th of April. Was on HRT for the hot flashes, night sweats, but had to quit "cold turkey" when I was dx'd. So they started up in earnest in December...the onc has me on Effexor, an antidepressant, which has really helped the hot flashes. I went from having about 20 - 30 a day to maybe 3 or 4.
Vegas...I am on Taxotere, with Carboplatin and Herceptin. I did have a severe reaction during my 1st infusion. But they predmedicated me for the 2nd with Decadron and I have been okay...have had some swelling and itching, but have Lasix and Benedryl on hand if it is too much. I have 4 down and 6 more to go. The decadron makes my blood pressure go up and may have something to do with the swelling too.
Happy Birthday Steph...I too am an April birthday, along with my oldest daughter and son (they will be 23 and 21 on the 26th & 17th, respectively) They are both sick today with some kind of stomach bug, so I am staying away from them...as if I am not queasy enough. The rest of the kids and DH are staying away too....I have been wiping everything down with Clorox wipes.
I guess I will plan on working tomorrow...I work in a busy bank and have appts with some customers scheduled. My Manager is off due to her mother's death and another person is having a hysterectomy tomorrow, so we will be short staffed. Since I am the Asst Mgr, I need to be there. They have been pretty good to me so far, but it has been hard with the manager out so much with her mom's illness. My staff has been very good about picking up the slack and helping me out, I tell them I appreciate it every day. I haven't missed much work and they yell at me to take care of myself.
Well...here is to a good week to all....Love,0 -
Catherine, I was on AC and my onc said as long as I was within a week I was fine and my blood counts were always good. I had AC on Thursdays and twice had my shot on Monday, once the following Tuesday and the fourth one the following Wednesday.
Melanie, I would be delighted to talk with you about the one step! I used Drs Ashikari (breast surgeons) and Dr. Salzberg (plastic surgeon). Dr. S invented the procedure and is also one of the top 100 doctors for women in America. Dr A Senior used to be the head of breast surgery at Sloan Kettering until he started his own breast clinic with his son. They are all amazing, and on top of being acclaimed surgeons they are just incredibly compassionate (and funny!) people.
Dr. S has his own web site at http://www.mybreastreconstruction.com.
But I would be DELIGHTED to talk with you about it in person if you want - just email me your phone number to move2lasvegas at aol.com and I will call you! I can't say enough good things about them, and I feel blessed that I found them so quickly when I was in panic mode trying to make a decision!
Also there are a ton of other women on the facingourrisk.org web site who have had this surgery done as well, and if you want a bunch more women to talk with, I can hook you up with them as well. They were gracious enough to talk with me before I had my surgery, and it made all the difference in the world. By the time I got there, I was really not that nervous. And trust me, the chemo is much harder than the surgery was!0 -
Vegas; Thanks! I really might want to talk to you. I have just emailed photos of my chest to Beth Cerbone at Dr. Salzberg's office. I have already had my mastectomy and Dr. S said they would need to see the photos to help determine if they could now do the reconstruction. You traveled even farther to see them than I would need to. I live in Arkansas. Did your HMO cover any of the cost of it? I am on a private BCBS plan and they can be rather difficult to deal with, but I am willing to pay out of my pocket if that is what it takes.
Hillary; You are probably right about my not being able to handle all 3 every 2 weeks. Until #3, I would have thought I could do it. I still would think I could do it, except my RBC's were down for the first time last week. I was pretty surprised. They were not low enough for a shot, but they were lower than the normal range.
Carynn; Uh Oh...I slept through most of the race! I woke up in time to see your man spin out
and then the rain... 0 -
Vegas; Sorry...I just read where you were having issues with your insurance. So, I guess that answers my question. I am sure I will have problems doing this out of state also. My argument will be that I am not able to find anyone closer who does the one step procedure.
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