August 2010...anyone starting chemo besides me?!
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catamtykel, we both have chemo tomorrow. Let me know how it goes. Thanks for the website. I don't think my Onc knows much about natural treatments or supplements, but I will quiz her about the CoQ10 anyway. I am normally so against meds that these toxic drugs also scare me, so I am just giving it to God. I have to trust he will take care of me. Hang in there, Coleen
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Good evening Liz-
I don't know about the node question but my best guess is two. I was diagnosed on 5/05 (my 48th bday). 5/12 met with bs, onc, and rad onc, and then even squeezed in with ps. 5/28 bmx. I haven't had any problems with drs, touch wood. So sorry to hear of yours, it just makes a trying time yet more difficult. Happy with my onc? Sure, as much as I can be with someone who is going to pump me full of yuck. I got two opinions and both said basically the same thing; T(taxotere)AC or AC and then T(taxol). As my port this Monday and my chemo on Tuesday were cancelled I have a bit more time to mull things over. Maybe not such a good thing. (c: I am going to speak with my onc again and hopefully get my mind wrapped around what I need to do. Why don't you call and have your doc scan you the paperwork you can't locate? And I bet he/she would have no problem with a tape recorder if you wanted to use one. And yes, I too have PDMML and stare at the talking head wondering if this is real or not! Good luck to you and us all. Cheers. BTW hair coming back purple would be kinda cool.... a third eye would suck tho'.
Ginger-
A baby girl, awesome, wonderful, heart warming, congratulations.
Sohard- may you find resolution tommorrow, prayers of healing for you.
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Scrabblelady, the port doesn't bother me. My bra straps don't touch it. Actually the port has been the easiest part so far for me. Good luck. Coleen
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Adey:
I actually don't have doc troubles, per se, as my BS is one of the best Yale has ever seen and my PS is fantastic also. I did, however, fire my first team b/c my BS spent the preponderance of a short conversation about paperwork mix up yelling at me the Friday before she was to operate on Monday. I hung up on her, thanking her for giving me a care-free weekend befofre my bmx and sat there with 2 friends, one of who is a medical professional, and 1 75 yr old census worker who heard her treating me in such a way, as she was on speaker, and they were collectively startled. No one even knew what to say. I was stunned and all I could think was she was a loose cannon. For this reason I cancelled surgery and called my father's doc from Yale for a reco on a BS and that is how I was absolutely blessed to find my new team and everything worked out perfect.
My current BS thought it would be nice to send me to chemo near my home which led me back to that hospital with the nut job first BS that I fired. The first words out of that onc's mouth was "what bring you back this way?!" Seriously?! Is this a high school? I explained my BS wanted me to have chemo there b/c it is close. In the end, their collective recalcatrance leads me to believe it was sour grapes b/c I did not bmx at that hospital and fired that surgeon. I cannot believe how juvenile and pathetic people that call themselves doctors were being....blackballing a bc patient?! Now I could be wrong but how many of you went to onc's who's staff never returns calls, never set up scans and 1 month later calls to say they are worried about how long it has been since they heard from you!? Likewise! It is really, really gross that medical oaths seemed to be tossed and childish behavior prevailed. An ex of mine who is a heart surgeon in NYC said I should write to the AMA about this....perhaps I will.
In any case, that is the long story of a professional outfit that robbed me of 1 month while playing stupid games with a bc patient. I had to get restarted at Yale and now the scans will finally get started and I will get going but I can't get back the month I lost between July and August. It is really grotesque when I think about it.
Needless to say, and sadly, I am looking forward to getting started! It is nearly 2 mos since my bmx and with an aggressive cancer that totally took over my sentinel node leaving no evidence of a node in it's wake and made that node 100% cancer, I am a little concerned about putting off chemo for much longer. And so it goes, I guess?!
So here is to purple hair and no 3rd eye!!!!!! I took you out of the "on deck" circle and put you back on TBA with me! More time to buy wigs and learn that, as someone else mentioned this, tricky scarf knot!!!!!! Good times, good stuff!
Ginger: congrats on the new addition! Enjoy that little bundle of fun and happiness!
Liz0 -
I just wanted to send out good wishes and lots of love to those girls starting chemo this week! Take care of yourselves as much as possible. Treat yourselves with tender loving care, and know that we are all with you!
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Hey just quick hello i start my chemo in six weeks from now if all goes accordingly to plan , just had my second operation 12 August for safer margin, on my breast and all my lymph nodes removed in my right arm i don't know how many were removed till Thursday , as it showed did go to 3 of my lymph nodes microscopic in the first operation on the 22 July operation .
Thursday i get the results fingers crossed ...... ok chat soon .... .
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Coleen - me also, with doctors. I simply do not trust any of them. My son was misdiagnosed by two ER doctors and one pediatric orthopedist as having "growing pains" when in fact he had a spinal infection that required 8 days in the hospital and a pic line at home, when he was five. I was misdiagnosed with a "virus" when in fact I had lyme disease. I pushed but my doctor wouldn't listen. I knew it was not a "virus". It went on so long that antibiotics weren't effective (once I did find a doctor who actually recognized it for what it was and treated it.) Actually they were effective the first two times I was on them and and then the lyme became resistant. I ended up going to a naturopath who cured me completely of it.
I sure wish they could do that with cancer. So I'm very leary of doctors. My husband always tells me "you have to be your own doctor" meaning find someone who will listen- make your own medical decisions as you can't always trust a doctor that they are correct.
With my BC, the radiologist who read my second mammo told me to just go get a breast mri - or to wait a few months and come back - that the lump i was feeling in my lymph node was just a cyst and not to worry about it.......good thing I didn't take HIS advice!
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Calamtykel- Yikes. My GP said the same thing about my lump, wait... are you kidding! I'm looking for a new one now.
Liz- I'm glad you found some drs you trust. It'll be three months out for me when I start chemo (due my my slowly healing stupidity burn) and strangely I too "want" to start. What a summer. Let's do this thing.
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I'm leaving in a few minutes for the treatment center. I think I'm more terrified of this than the morning of the surgery! =:O
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Calamtykel- warm healing thoughts.
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Anybody out there "crampy" after chemo? I'm going to school today and get the library ready for action. Have my daughter for free labor (one of the perks of C they don't argue so much) Beth
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Rachel: I'm with you on the scarves. I only bought one and two hats because the hats seem easier!
Liz and Warrior: Thanks for the poem.
Good luck today to CALAMTYKEY, OMAZ AND DEBJ. I will be thinking of you and hoping that your nerves are calmed and that you are doing okay. Update when you can.
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Hello my dear friends. I hope everyone had as nice a weekend as possible, fabulous even! I have not posted in a while -- preoccupied by other stuff I guess -- but I have been silently checking in on y'all and following along. I have a few comments on some issues that have been raised, and then I'll fill you in on how I'm doing, etc.
Adey: You remarked in your post that in this litigious society of ours, recording dr's appointments would never be possible. That is wrong. You have every right to record your dr. sessions. I recorded every appointment I had, especially at first when everything was new and each appt. was packed with new information. I did it with my bs, my surgeon, the several onc's that I saw, and not one of them had a problem with it, as well they should not. In fact, they were very encouraging and understanding about it, patiently waiting for me to set up my recorder, etc. You need not be embarrassed or self-conscious about it because you are there to understand critical things about YOUR health, not to be intimidated by a dr's ego or impatience (which I never encountered). If you run across an onc who is uncomfortable being recorded, then first I would ask why, and then explain that you are overloaded/overwhelmed by all the info. and simply want to make sure you can remember and understand what is being said to you. However, you shouldn't have to explain this at all (I never had to), and if your onc still says no, I would seriously question why and possibly even consider another onc. If the onc is not confident enough about what s/he is saying to you to be recorded, then this might be a warning flag about his/her competence/confidence as an onc. My experience with this has been a non-issue. I think oncs (and docs of all kinds, especially specialists) are used to this by now, and if they aren't I would really wonder why it makes them so uncomfortable.
Gingerbrew: a hearty echo of congratulations to you and your family! I am so happy for you! I am assuming from your post that everything went well , and that everyone is healthy. If you don't mind my asking, what is the new grand baby's name?
Sohard: I am sorry you are having such a difficult time with your bleeding. But please don't worry about posting "personal stuff" here. We're all going through a lot of personal stuff, physically and emotionally, and being able to talk about it all, seeking and giving advice and empathy is why we are all here. So I say, "Let it all come out!" What do we have to be embarrassed about anyway? So I promise to talk about my constipation/diarrhea issues if you promise to go on talking about your bleeding or anythings else for that matter! Deal?
(As for the constipation issue, my onc gave me detailed instructions for dealing with this. It's all laid out in a chart for which I can't replicate here, but in a subsequent post I will do my best to detail the information.)
A few people mentioned not knowing how to tie scarves. Some places that you order from will send along instructions for this, and some websites even have video/YouTube illustrations. I know that headcoverings.com is one that sends instructions with your order. I know there are others too, but can't remember which ones. Maybe others will know.
I am feeling sort of normal by now. I'm on Day 15. Days 3-10 were pretty miserable, though even then I was usually still able to get out of the house and tend to some of my regular daily activities. But since Day 10 or 11 I've been gaining a little more strength, stamina and relief each day. I've been running a little, and my dh and I even played racquetball yesterday. (I won one game out of two.)
For those of you who have expressed your interest, my dog, Bixby, is hanging in there, but he's had a rough several days. The meds he is on for this autoimmune disease have caused terrible weakness and muscle atrophy, so there are times when he can't stand up from a lying position because his hind legs are so weak, so we have to lift his hind quarters up for him. Once he's up, he can walk and is still interested in things, though. I don't think he's in pain, just weak, which will hopefully improve as we begin to wean him off the meds next week. But we did have to go into the vet for a surprise visit this weekend. Scared me, but turned out sort of okay. It's just that it breaks my heart to see him like this.
That's about it for me. Thank you to all who responded about my mouth sores. They are MUCH better, hardly noticeable, really, and I have another week of enjoying a clear mouth before I have to do it again.
Welcome to all the newcomers. This group has been a tremendously valuable find for me, and I hope it is for you too!
And good luck to everyone beginning their treatments this week. We will all be thinking of you!
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Wherria- actually that was Liz and I told her I didn't think they would mind. Confronting drs is not a problem I have, there are so many others that I do! (c: I'm hoping to visit the place in Naperville you recommended and maybe she will be able to teach me to tie a scarf! Thanks for the info btw. I'm glad you're feeling better and hope your puppy soon will too. It is heartbreaking when our fuzzy ones are sick. Take care.
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Wherria: Thankfully, before my bc dx had been in the hospital once and that was 1987 to have my tonsils out! I just assumed (and we all know what the breakdown of that word is!) dr's would object to recording. The only dr I see is my GP of nearly 3 decades and he is excellent. I trust him implicitly and, in fact, when I did NOT want to have my mammo this past March, he encouraged me to get an ultrasound at his office as he has a mobile unit that comes in once every few weeks. In any case, with him being the only doc I see besides my dentist, I never thought to ask about recording. Thank you as I now know! I guess the caveat would be if a doc did not want to be recorded!
Adey: about to start making my phone calls now to ask someone to please get my scans set up!!!!!! What the hell?!
Liz
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Hi all--on Day 4 post first chemo and feel pretty good today. Day 1 was horrid, Day 2 not bad but still a lot of nausea and a little puke. Day 3--was fine all day--ate (light) but kept it all down, went for a walk last night which helped to clear my head, woke up today feeling even better. Hopefully, I am out of the worst. I am keeping close watch for mouth sores and rinsing religiously with club soda, biotene mouthwash and brushing with biotene toothpaste. I am hoping that I will avoid those. Getting hair buzzed this week and still awaiting bone scan at end of August--last thing causing me worry and concern--look forward to getting that done and over and good results.
Good luck to everyone starting this week--this site (and specificially this topic) is/was a godsend to me during this. Thanks to everyone (esp Lizzie--who keeps it all flowing). Take care, Rachel
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Speaking of GPs mine said; you could wait a few months to see if its hormones when I showed her the lump, WTH indeed. Looking for a new one for DH and I now. I guess I did have a bad experience! Good luck with your phone calls. No mercy, don't take no or I'll get back with you as an answer! Get 'em.
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Liz: What chemo regimen will you be on? You're doing Taxotere?
Rachel: Glad you are feeling good. Maybe I won't have a lot of problems with FEC.
Good luck to all those starting today. Prayer are with you.
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Adey: my GP is fantastic. If it wasn't for him I would have never even gotten an ultrasound nor went onto the mammo. I thank him for saving my life every time I see him! I have never, however, had a good relationship with a gyn. I don't know why that is. I have continuity with my lawyer, dentist, GP, even hairdresser but not my gyn?! In fact, when I found out I had bc I called the gyn I saw the last time I had a mammo and b/c it was nearly 17 months since I last saw her she would NOT EVEN TAKE MY CALL!!!!!!!! She told her staff I would have to come in for a visit. Now here I am, riddled with the vulnerability of a bc dx, scared of what is coming next, wanting to talk to my gyn, as it were!, and she won't even take my call!
Well, just off the phone and NO ONE has any order for scans...and the wheels on the bc bus go flat and flatter, flat and flatter, flat and flatter!!!!!! I have just been reduced to a childhood song as a way to vent my frustration over nearly 2 months since bmx and CAN I GET A SCAN PLEASE?! Could you please put some poison in me?! Gadzooks!
Liz0 -
Rachel: I love your avatar! You look like the happiest person on the planet! Mine is the illustrious Griffith Park Observatory at night and I chose it because it is reminiscent of George Bush Sr. "thousand points of light" reference! This summer I was on a boat and I realized, as they are undoubtedly avid sailors and yachtsmen, where he probably got his "thousand points of light" inspiration. If you look out across the ocean on a sunny day, from a boat or land, it looks like a 1000 points of light! Anyway, unlike NYC (my favorite city!), at least from Griffith you can see the city and how beautiful it is at night.
So, back to you! You do have beautiful hair and if you are getting it cut off at a salon, perhaps prior to going you should call a local children's hospital to see if their cancer center has any use for your hair. Don't forget, 7" of your's is long for a child. I am a little suspicious of company's that say they are making wigs for kids but need 10" of human hair at a minimum? I wonder if they are talking about the 50 year old kids that grace the likes of the "Housewives" shows on Bravo! In any case, you hair should go somewhere but the floor of the salon.
I, for one, am totally enjoying my savings from no highlighting (saved about $700 since dx!), no expensive shampoo (bought some stuff b/c I liked the price of $2 and the way it smelled!!!) which would normally cost me $50 a clip and now, this weekend, I am going to get one of those "self highlighting kits" and totally experiment/ruin my fur before I comes out!!!!! As a young woman I never, ever did any experimenting with colors etc.. so it is going to be fun to just open the box and let it rip!!!!!!! I encourage you all to totally mess up your fur with any experiments you NEVER did because you were afraid of the results as it is coming out anyway so have some fun!!!!!!!! I can't wait to see the results!
In the end, however, fur-talk aside, I am sorry we all qualify to be on this thread...so let's make the most of it!!!!!
LizPS-go crazy coloring it up or cutting it IF you can't find an appropriate donation center is what I should have said!
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Lady: that is a good question. When I saw the onc last week, he gave me a handout and that, as well as my notes, have gone missing! I am going to be on TAC I believe? Thank you so much for the question because it triggered my thoughts to call the onc for a copy. When I get that copy I will know exactly what I am getting! BTW, your avatar is so adorable!!!!!!!! I LOVE those dogs!!!! They are just so cute! I am a huge animal lover and donate to the ASPCA, pre-bc dx that is! Now I donate to Walgreens and CVS! My cat I have now was living along a very busy interstate near my job so I took her home! She is wonderful. I was going to get a dog but b/c I was never home b/c of work and live alone, I did not want them to not have company etc... but with the development of "puppy pads" and with small dogs, I am seriously reconsidering my choice. I do like dogs and would love a pug!
What kind of chemo will you be on? Quite frankly, when he read me my options, I just was like whatever! As far as I am concerned it is the choice between 2 identical items. If it was a perfect science, I would ask more questions but as far as I am concerned, they know more each year about bc, and we have come a long way, but they are still making educated guesses as to what to do with us so I don't bother with too many questions. What is the sense?! Yes, I will take the plain bagel with glass in it!!!!!!
I hope you and your dogs are having a lovely day-
Liz
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Liz-
Hah! I like you. Anyhoo, I don't have an ob/gyn. I only did when I was birthin' the girlies. My GP, whom I originally liked, would do the pap and mammo scrip. Do your drs all work as a team? If they do perhaps a more accomodating one could order the scans and get things moving, say you bs or ps instead of your onc? Maybe you could show up in person and make some noise? I dunno but I am sending you some kick ass vibes from IL. Please put poison in me... hah again and I feel the same way, YIKES!
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Angelice-Welcome and happy to have you. I have added you to the list, as I have some time this morning, and, as I tell everyone, happy to have you but sorry you meet the criteria to be with us!
Best of luck and keep me posted on your dates-
Liz
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Lizzy: I'll be FEC x 3 then Taxotere x 3. He said Taxotere instead of Taxol, he called Taxotere "second generation Taxol" and he said no A because I've had heart issues in past, so the E in FEC is supposed to be gentler on the heart. Like you, I didn't question too much because he's supposed to be the best onc in town and I felt lucky to get in to see him (he's part owner of the cancer center here!) But then I started reading all that stuff about Taxotere and permanent hair loss and though I've tried to take it with a grain of salt, I've let it get in my head and I'm doubting myself and him too now.
I was diagnosed in late May and wish I could just get on with my chemo. The longer I wait, the more doubts I have. I'm on hold because I still have a post surgery drain in, after almost 6 weeks! And it's not showing much signs of shutting down. You said your onc reassured you about the Taxotere?
My puppies (10 months old now) are Beagle/Pekingnese mix, brother and sister. My hubby got them for me at Christmas. Some days they are my lifesavers and some days I want to kill them like when they've drug a pillow outside and torn the stuffing out of it.
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Ladies! I'm posting from my chemo room! The AC is all done and I'm getting fluids now. Before they started, they pumped some happy medicine into my veins and it's been cool since then.
I have a little heartburn right now but I'm also drinking tons of water and I'm a little hungry (afraid to eat too much or too weird right yet!) I got hit with two different antinauseas IV, and they are sending me home with two emends.Insurance is being a bear - $50 copay every time I pop my face into this place. So for tomorrow for the nulasta shot I have to pay $50 out of pocket AGAIN.
However, I'm told if I don't "see" the doctor tomorrow, they won't have to bill it as an "office visit". The insurance co won't approve my getting it as a prescription. So I have to come back -and the insurance company would rather pay for the office visit I guess, which is total nonsense. I'm really beginning to hate United Healthcare! GRRRRRRR! But anyway, I'm here - I'm peeing like a racehorse - every few minutes. Now the salines going in so I'll be in the bathroom even more! I'm told that's really important for the cytoxin. I'm peeing red too, which is weird.
Strange taste in my mouth, woozy tired but hanging in there. Praying for the best and to be able to cope successfully when I get home with what the next few days will bring me!
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Hi Ladyinbama---I spoke to my Doc about the perm hair loss and he said that is an abnormal side effect and certainly not common. I am doing 3 X FEC and 3 X Docetaxel. Am buzzing hair this week but after reading Lizzie's comments will doublecheck re: donating hair--mine is to my shoulder but I heard it needed to be 10inch long (Lizzie--probably right for housewives of orange county or something---not that I watch junk tv
I am buying a good wig at the store that specializes in chemo patients but then ordered a couple of wigs from ebay for 0.05 cents (Yes, you read that right) from China--god knows what they will look like--but may as well have some fun during this. When I was in highschool--I was a big experimenter with my hair--so I am not as attached as perhaps others--granted that was 30 years ago and pre--kids. Take each day as it comes right? Purple/Pink--may as well glitz it. Someone told me that once you start wearing a wig or scarf--just put more makeup around your eyes--bring out another feature.....I'll post a new avatar when done!
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Rachel: that is hysterical that you bought wigs from China for a nickel!! They will probably be hay!!!!!!!!! I cannot wait to read your post on what arrives in that box! I am buying wigs online. I should go to a wig store but I don't want any fancy nonsense! I will probably do the hat/bald/scarf thing most of the time. I am just realizing that with how long it takes to get my scans and get chemo started, it is going to be COLD out when my 18 weeks is up so a wig under my hat might be nice.
BTW, if anyone is interested, I found "human hair" eyebrows online! Not joking....$45 plus shipping so will probably be $90 w/tax and ship! I am going to order them so will post my findings. If anyone wants the website, pm me.
I think I need to go workout! I am getting so bored and stir crazy waiting for this chemo to start and to get on with things that I am getting, as my Italian grandmother would say, agita! The word is Italian-American slang derived from the Italian "agitare" meaning "to agitate."
Liz
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Rachel: I speak 3 languages, have a pretty high IQ and am a regular NPR listener but, and so sorry to report, since home with bc I started watching "Housewives of NJ," "Jersey Shore," and all I have to do is add "Springer" to this repertoire and I will officially know they took my brain with the tumor when I had my bilateral! I got sucked in! I know I will lose interest soon but is all so anomalous and crazy and "Jersey Shore" reminds me of my partying days in Manhattan, some 10 years ago, so it is funny! I guess I get lost in my reverie. I did not, however, poof my hair in my 20's...I did in my teens, though!!!!!!!!!! AQUA NET!!!!!!! I will never forget, my friend Gina was short and her father owned a hair salon so on concert nights or when we were going out clubbing, teens/early 20's, her father would really POOF her hair so much so that when we rode in her car, Iroc Z w/t-tops, we would have to leave the t-tops open! It was hysterical! He wanted to seem taller so she could meet a taller guy! Very funny stuff.
Liz
PS-I understand if you no longer speak to me after I revealed my tv watching menu! What I really watch is CNBC and HGTV most of the time but that Bravo sucked me in!
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Calamtykel: So glad it's going ok for you, I know you had worried.
Rachel: Like Lizzy, I can't wait to hear what you get for a nickel.
I wish I could go run to work off some agitation. I've still got a drain in and they said the more active I am, the more it keeps draining. So I'm lieing low but it sure is BORING!
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Calamty: I, too, am glad you are doing ok but those copays? 100 each time?! Geez....that sure do bank on this here cancer business! Isn't technology great?! You can post from chemo. That is so cool.
Lady-I had one of those stubborn drains. I think you mentioned heart troubles in your family so I won't advise you to do what I did which was eat more salt as it is a retention agent. The only thing I drink is plain water or seltzer but I don't drink anything else and the seltzer cannot contain any phenylketoneurics. Aside from that, 2 cups of coffee in the morning. I knew with all my water consumption those drains were never going to stop so I slowly put an end to that. In any case, conventional wisdom says they should not be in for more than 4 weeks. I sure hope your's comes out soon-
Liz
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