August 2010...anyone starting chemo besides me?!
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I had a mugga test today and should have taken ativan beforehand as it was somewhat claustrophobic. I hope the short time i was trying to squelch my sobs didn't ruin the scan. ct scan tomorrow. port placement on monday then bone scan on tuesday. this is happinging way too fast. Got a free wig today and it is horrible. Will call the wig shop tomorrow and pay for something better.
meeting with NP tomorrow for "chemo teach" so better go make a list of questions to ask.
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Hi guys,
Thanks for including me as an honorary August girl!
I cut off my hair today...boy is it short! But I got the 10" I needed for donation so I am happy. Cancer didn't take my hair...I gave it away. The only problem is now I look like my mother and all my aunts who have almost the same exact haircut. So while everyone is telling me I look younger, I can't help but feel like I joined the senior citizen generation! Oh well, in a couple of weeks it will be gone anyway and I am glad I did it on my terms.
Jet: I am so happy for you that you don't have to join this group!
I start my first round tomorrow so I will let everyone now how it went. I am on TC X 4, once every three weeks. Going to try to go to sleep, but the past couple of nights my mind has been racing and that hasn't been too easy. Hopefully once I get through the first treatment it won't be so bad and I can relax.
Good luck to the other girls starting tomorrow and early next week. Talk to you soon!
Debbi
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Debbi - I just made an appointment to get my hair shaved next week. I decided to wait until I actually started, but I felt the same way: I wanted to be the one who decided when my hair goes. My decision, not the drugs'.
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sptmm62 - Debbi - Good luck today with your first chemo. I'm on T/C every three weeks for four times. I had my first on July 22 and will have my next on August 12. My side effects were minimal and the infusion itself went smooth. They did give me ativan for anxiety before we started and three Zofran for nausea. Make sure you take a stool softener/laxative day of and couple days after. I didn't and wound up pretty constipated for like four days. I had one bad day Day 5 and I still have trouble sleeping even though I feel good. I'm calling my Onc to try to get something stronger to knock me out. The ativan just doesn't do it for sleep. I hope yours goes as well as mine.
I hope everybody starting chemo for the first time has as good as time with it as I have.
Michelle
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****ATTENTION ALL ON THIS THREAD*****
BECCABRITE AND SPTMM ARE STARTING ***TODAY ***SO LET'S ALL SEND WELL WISHES. THINK OF OUR SISTERS IN THIS FIGHT WITH POSITIVE THOUGHTS THAT THEY WILL HAVE AN EASY ROAD AS THEY BID BC GOODBYE.
WELCOME TO OUR NEW AUGUST CREW GUESTS!
Deb J
IowaSue
Wherria
Beccabrite
(wife of) Sundiego
Huntreiter
In the on-deck circle (*BASEBALL REFERENCE!) for next week are:LISASINGLEM 8/2
SOHARDBNME 8/2
ENGLISHTEACHER 8/3
HUNTREITER 8/4
KATHLEEN17 8/4
GOOD LUCK AND KEEP US POSTED
&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&
Beccabrite: of course you are welcome!!!!!! Silly question! I wish you the very best today and look forward to your next post. Don't forget, we are making progress!
Wherria: Your case is a bit anomalous but there are so many variations on this disease. The lymphatic system, as I am sure you know, is simply a filter to fight off and rid our system of things that do not belong. Now, having said that, each node does not have infinite capacity to do every job. As you already have an immune system challenge (s), it is entirely feasible when your body picked up these cancer cells and knew they had to be dealt with, they were just carried to the next available worker to deal with, much like the next available teller gets the next customer. The lymph node where they landed was the one that was available to do the job at that point. Nodes come in chains because they share jobs. If one node could do all jobs, we would only have one. It is a chain of industrious pebbles trying to keep us out of harm's way.
In any case, I am very, very sorry your dog is sick!!!!! That is a lot for your to be dealing with alone so, as you very well know, you are not alone and post all you want so you feel connected during this time of DH traveling and doggy sickness! BTW, do you know your start date or did I miss it? Just like to make sure everyone is included.
Zenith: things do seem to be happening fast but at least you are closer to getting it ALL over with so that is the silver lining. If it was being dragged out it could be more frustrating. I have an issue with claustrophobia and after going through 9/11, I also have an issue with flying as a result of both of my afflictions. More to this point, however, is I don't like closed MRI's and, based on your report, I probably would not take well to this mugga test either so I feel for you. We are all in it together so keep us posted on your entire experience so we can share it with you and be supportive.
Michelle1014: How are you doing? Looking forward to an update and hoping your first week after your first treatment has been a breeze (smile!).
Update on the list I created:
The format I created is driving me bananas!!!!!! I am going to try to make a chart this weekend with just your screen name, start date and type. There are limitations in this system relative to cut-n-past charting so let me see what I can do with this. For now I very much feel I have created a discombobulated eye sore! I will fix it, girls (and husbands!), I promise! Also, please, if I ever miss anyone just PM me or post on the board and I will fix it.
Have a nice weekend all-
Liz
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NAME STARTED TYPE DURATION EXPECTED COMPLETION DATE NAME START DATE TYPE DURATION EXPECTED COMPLETION DATE 0 -
Well...I tried to cut-n-paste a table and that did not work! I will come up with a new format this weekend.
Liz
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Hello all-
I just received my first batch of pageboy hats and a hat/scarf type of thing for when I start to lose my fur! BTW, I found a new onc and will be starting chemo around Aug 19 or 20th. In any case, I wear baseball hats in my non-work, spare time frequently so this is not a major departure from my style anyway but these that I received are quite nice and are of good quality.
In the event you want to know what website I used, PM me. I found it through the American Cancer Society website and I bought 3 of these, for less than $50, just to try them out and I love them!
Liz0 -
Okay guys, I am here to report back. Got home around 4:00. The whole process took a while but went really smooth and right now I feel perfectly normal. I had a reaction to the Taxotere, my whole body got really itchy and I developed some hives. They slowed the infusion down and the itch lessened and was bearable. The Cytoxan gave me a sinus like headache but the Tylenol took care of that.
So, I am sitting here wondering when I am going to get really sick. I can hope never, but I doubt it. I am going to go take my son for ice cream and run a few errands. I will report back tomorrow about how I feel.
For all you girls dreading this.....could it be this easy...I guess I will see but hold onto hope!
Debbi
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Thanks for the update, Debbi! I'm hoping for something similar on Monday.
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lizzymack1 - I am doing great had a rough time Day 4 evening and Day 5, but mostly just major fatigue but I couldn't sleep. That was the worst being sooooo tired and not being able to sleep. Day 5 evening I finally took two ativan and slept. I have felt pretty decent since and I am on Day 9. My next infusion is April 12th so this next week should be good for me. I feel very blessed that my SE have been so minimal.
sptmm62- My SE were not bad so don't think the worst. I felt the same way, you feel like your just waiting to see when it is going to get bad. I actually never had more than very major fatigue and only for a day and a half. Keep a postivie attitude and maybe you can sail through too!
I pray for everyone to just get through this as best as possible. I'm going to our cabin tomorrow and have a great day in the sun (of course with sunscreen and a hat) with my husband, my very bestest girlfriend and my husbands daughter and her boyfriend. Everyone have a great weekend!
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I am scared to death...I get chemo Monday...I am cutting my hair tommorow...I am frightened...keep asking myself is this real, is this a dream...
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Zenith,
it is alot...i had a pet scan and muga test two days apart...all these injections...i want it over...
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Thanks for adding me... I will update you on Monday for regimen... I need all your support... I am offering mine as well... I AM SCARED OF THE UNKNOWN... I may be a lucky one with little side effects...
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Here is my treatment regimen thus far...Everyone, I need SUPPORT...
May 24 - Went to a GYN appointment for uterine fibroids and doctor found lump.
June 2 - Breast ultrasound and Mammogram, discovered two clusters of micro-calcifications in left breast
June 9 - Met with Breast surgeon, she gave referral for biopsy
June 16 - Stereotypic Biopsy
June 21 - Diagnosis: 06/21/2010, DCIS, Grade 3 & IDC, Stage II, Grade 2, PR+ HER2+ER+
June 30 - Lumpectomy, 2 cancerous lymph nodes removed
July 7 - Pathology report stated 11/13 positive lymph nodes; in addition, my margins are not clear.
July 14 - Met with medical Oncologist, he wants me to start chemotherapy before another lumpectomy or mastectomy surgery to clear margins. He gave me a BCRA test.
July 20 - PET scan
July 22 - PET scan results... did not spread past lymph nodes and BCRA test results... negative
July 24 - Muga test
July 26 - Port inserted
Haircut tommorow or Sunday
Chemotherapy scheduled for August 2
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sohardbnme - I'm right there with you. I start on Monday as well. I find myself obsessing over what-ifs. Everyone keeps telling me that everyone is different, so there is no way to tell which SE's you will have until you have the treatment. I got into an argument with my husband about it tonight. He kept saying "well, what did they say will happen." I told him that they don't know. He said, "Can't they do some kind of test to tell you." I told him that the first day of infusion IS the test.
The not-knowing is really the hardest part of all of this. My guess is that for both of us, after Monday, we will simply adjust to whatever happens.
It is scary, though. I keep thinking that this weekend is going to be the last time I feel good for 6 years.
Take deep breaths, try to relax in whatever way you can, pray, meditate, whatever helps you be calm, and know that you are not alone. That's what I am doing. Good Luck!
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REMINDER: chemo patients are generally advised to buy several, soft-bristle, toothbrushes and use one for only 3 days or so and then toss it. In addition, a mild toothpaste is recommended as well. This is b/c of the potential for mouth sores and the impact chemo has on the chemicals in our mouths. I have a Braun electric so I purchased 20 Oral B traditional brushes. Don't go to the dollar stores b/c those of are awful quality and can ruin the enamel on your teeth during chemo from what I understand. Unfortunately you have to literally toss away money on buying a decent quality brush that will fast hit the garbage! Double check w/your oncs about this one but it is normally advised to all chemo patients.
Debbie and Michelle: thanks so much for the update! I am glad for Michelle that you just had a little minor fatigue days 4 and 5 and for Debbie, I hope you enjoyed that ice cream with your son! Good luck to you both as we will all be joining you soon enough!
Sohard: I started this thread so we can all be here and support each other. We will never forget each other nor the 12 weeks we are all going to spend together and we need this time together and to be able to go somewhere where everyone understands. We will be sending the best wishes your way for your start next week and for everyone starting next week.
Again, I am going to fix the list this weekend and will include all updates.
Goodnight-
Liz
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Today I learned about my drugs (AC + T) and all the nasty side effects that of course they will try to minimize. Couldn't do the CT scan as they couldn't find a good vein so they want to try on Monday after I get the port. I had BC in both breasts and had 18 nodes removed on the right and 12 on the left so trying to avoid lymphedema is a nightmare as is trying to explain that I have no "good" arm for blood pressure, draws, etc. They tentatively want to start first infusion on Aug. 5th which is scary early but might as well get it over with.
feeling somewhat healed from surgery. I don't want to look or feel sick and this more than anything is why i dread the chemo. my BC didn't make me look or feel sick but now the aftermath will. my dh keeps referrign to this a a "mopping up operation" I am not sure i like all the war analogies but i went with it and joked that each hair on my body was a soldier who will be sacrificed.
sohardbnme - i hope we are both lucky ones with little side effects.
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Zenith: don't forget if we read all the potential side effects on every OTC med we take, it would be nothing short of stunning. That is just for informational purposes only and certainly not something to be overly concerned with. Like I quote in my signature, from Mark Twain: I have been through many terrible things in my life, some of which actually happened! It is a warning against letting your mind and imagination run amuck calculating "what ifs"....worry about it when/if it happens.
From what I understand, the major SE's of chemo are fatigue and loss of appetite due to how chemo affects taste buds but they have to give us full and fair disclosure; that is the legal, be it CYA, part.
Liz
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Hi all! I hope in one way or another we are all going to have pleasant, relaxing, non-breast-cancer-obsessive weekends! I'm going to try anyway.
My update: I start on Mon. I'm nervous of course, but basically expecting it to go smoothly. I have done a lot of researching and gotten a number of second or third opinions every step of the way, and have chosen an onc. whom I trust and respect, and in fact, whose whole team I trust and respect. So i keep telling myself, there is no reason why I can't go in there Monday feeling good about the treatment I'm getting and the people who are giving it to me.
Getting the start date scheduled was a long arduous process, and almost got stalled again yesterday. First there had been disagreement among onc.'s about which Tx regimen, then there had been a host of intensive cardiac testing under the care of a cardiologist because I have a history of cardiac problems (not severe though, just enough to make my doctors, and by extension me, concerned about whether I am healthy enough to withstand this Tx at all. But tests came back good enough to go forward. Then a week went by while my onc. was trying to reach my psychiatrist about med interactions, what steroids and at what dosages she could give me without jeopardizing my mental stability, which is usually tenuous at best. My psych., who has treated me for more than four years now is an excellent doc, top of his field, yada yada, but sucks at returning phone calls. I've know this about him for a long time, but when I and my onc (the first time) talked to him about being an active participant in my Tx, he was so enthusiastic, said whatever he could do to help, gave her all of his numbers, even his private cell, that I got my hopes up that maybe if it were another physician trying to reach him, then he would be more responsive and return her calls. But alas, the week went by with her leaving several messages for him (obviously this is a matter of some importance), and getting no return calls. I was very concerned that my onc wouldn't schedule the Tx until she had a chance to talk to him. Well, she never did talk to him (as of yesterday at 4:40). In the meantime, her office had called me Thurs. to tell me that my Tx for Mon. was by no means a sure thing because my ins. co. was playing hardball and kept requesting more and more information before they would approve. AAAHHH! I was really upset and nervous. I've known about my CA since April 22. That's more than enough time hanging in Limbo Land to drive a person crazy. Plus, more and more, I've been starting to think, "I have this cancer inside me and it's not waiting for my doctors or my tests, or my insurance company to make up their minds. It's doing its thing!" (Of course, I know that we actually have more time to move through this process than we think or feel, but more than three months?! Anyway, yesterday, I left a message early afternoon at my onc.'s office asking for the latest. Got one call that they were still waiting, and doc was still making decisions about the Decadron, and they would call me as soon as something was certain. So at 4:46, I finally got the call saying I am on for Monday! Yea!!!. It was such a relief, because this is the third start date I've been given, and I was ready to shoot someone if this one didn't stand!
My psych. never did get back to my onc. about the med issues (she also wanted to talk to him about a few other things), and I also know that he is going on vacation this week. I have a really hard time getting angry with my doctors, but I think I'm pretty close on this one.
The great news is that my husband is home from his job in Indy and will be able to go with me to my infusion. Won't be around on Tues. for the Neulasta shot, which has me a little nervous, but I'll make do.
So that's my update. Feeling lucky and relieved to get the show on the road!
wherria
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Hi again. I'm sorry I keep putting up these long posts. I don't start out intending for them to be so long, but I guess I just get going! I do hope it isn't too much of a bother.
There are a few more things though...
sohard: I'm really sorry that you are feeling so scared right now. I think we all feel it in waves, and it sounds like it's high tide for you right now. I'll be thinking about you and lisa, (and if there's anyone else starting Mon. that I missed, please let me know) as I'm having my Tx too. Small comfort, I know, but at least we know we have the supportive arms of this group to come back to any time we need it.
Michelle: Very happy for you that your SE's has been relatively mild so far, and thrilled to hear that you are feeling so much better. May it continue to be so!
sptmm: Glad to hear your first Tx went so well, and that so far it's been tolerable. Sorry about the reaction and the hives, though. I can imagine that, at the time, aside from being extremely uncomfortable, it must have stirred up a little (or more than a little) fear about what would come next. Glad it worked itself out!
lizzymack: Thinking of you trying on your new hats brough a smile to my face. I happy that you like them. I'm sure you are going to look adorable. I've bought a lot of hats and scarves too, and had some sent to me as gifts. I plan to have fun with them, so I've been shopping in store for teenagers, because they seem to have the most hats and scarves that are fun, cool, and imaginative (and much less expensive) than other stores. I recommend it! My husband and I have made several outings to different malls and just wandered through the "juniors" stores, and have found a lot of fun things. And for the days I choose to go bald, I'm thinking of writing on my head in bright red bold letters, "Insert Hair Here!" with arrows pointing out in four directions!
(By the way, I told my surgeon, and I swear on my life that I will do it, if I choose to go back for reconstructive, instead of a fake nipple and tattooed areola, I'm going to forgo the nipple and have my tattoo look like this:
. My dh thinks it's hysterical, and I really want to do it!zenith: I hear what you're saying about not being too comfortable with the war analogies, but I do like yours at the end, that your hair is one of the soldiers being sacrificed. I would add to that, that when we go through a SE like hair loss, it can serve as a reminder to us that the medicine is doing what it's supposed to do. It's working.
Lisa; I sympathize with both you and your husband regarding the argument you mentioned. All the unknowns are frustrating for everyone (though, if you, or anyone else is like me, I really wish my dh would do more of his own research so that I don't always have to explain everything to him to make sure he understands what's going on -- they should be going through it with us, and for me, that includes educating themselves the way we have to educate ourselves). Anyway, you mentioned that you know everyone keeps telling you that "everyone's different..." I, myself, am getting tired of hearing MYSELF have to say over and over to people that everyone's different!
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To everyone starting chemo this week--good luck and best wishes for the absolute MINIMUM in side effects. I am still in limbo as to when I start -- either in two weeks or 1 month--will have to wait to see if BS needs to take more nodes. Am hoping that he doesn't so I can get started sooner rather than later. I had chemo education class yesterday and the Nurse suggested buying a case of club soda--opening one each morning and leaving the can in the bathroom--each time you go to the bathroom throughout the day--take a swig of the club soda and rinse/spit--this will help tremendously with the mouth sores. I am taking her advice and getting that club soda--any tips are appreciated! I will stay tuned to your journey's in the meantime. Take care, Rachel.
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I get my port placed on Monday and I am supposed to start very soon after (not sure if its the 1st or 2nd week in August)
My history- I am 27, have felt a lump for over a yr, the 3 drs i have been to all said it was a breast feeding issue and basically said dont worry about it. Fast forward to now and i got my dx july 22nd, found out yesterday it is in my bones.
Dont know what else to say
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I would like to thank you all for your support... I appreciate it and need it...
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FYI to all. When I was going thru chemo, I heard about a website that offered free head wraps. They are 100% and very nice. website is www.franceluxe.com. click on the "good wishes" toward top of page when website comes up to read more about program. I got one and it is very nice. Unfortunately, as I had no hair during the winter, it just wasn't warm enough and so I didn't wear it.
Free to the first person who pm's me. It is 100% silk Batik silk print design, mainly pink in color. Check it out and let me know if you are interested. If this color isn't your thing, then definitely check out website as there are many others to chose from.
To add on to Liz's comments. Biotene toothpaste and mouthwash. I used it all thru chemo (3 times a day) - no mouth problems. Colgate sells a super soft toothbrush that I used all thru chemo. I just made sure to dry it out between uses. Also, nasal spray if nose starts to get dry, and to prevent nose bleeds. But, since it is so humid out, this probably won't be a problem for many!
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Hi everyone, Day Two and still going well. Maybe developing a little thrush as my tongue is getting slightly white. I will try the baking soda mouth rinse and if not, take up the suggestion of Biotene.
To all those starting early next week, whose minds are going crazy with the what ifs...just keep a positive attitude. When I got to the treatment center for my first treatment, I expected a room full of sick, depressed cancer patients. What I saw and heard made me feel instantly at ease. There were about 7 other patients when I got there and all were repeats, they introduced me as the "newbie" to the Friday group. Most of them looked just like me..healthy although bald. There were two thin, older, obviously sicker people in there but I tell you they were the ones with the best attitudes, joking, laughing! With all the horrible things I imagined about chemo, I felt like it couldn't be all that bad if the mood in this room was so positive, so I relaxed instantly. I hope you will see the same. Worrying isn't going to make it easier, just drive you nuts! Whatever happens with side effects we will just manage them and move on through and in three months the chemo will be over and we will move on with our lives.
As I read on this board somewhere, "you just have to show up" and everything will be fine.
Good luck to all who start this week, I think you will find after the treatment that you look back and say, "okay so that wasn't as bad as I thought it would be". I know, even if I do develop more side effects in the days coming, I already know that the treatment was not as bad as I had imagined it would be.
All my best wishes to the "first week of August girls" on a smooth and uneventful treatment #1!
Debbi
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wher--it sounds like you have a good prognosis and a good doctor. Isn't it AMAZING what they can tell by looking at each person's cancer? I kept thinking that as I read your post - how incredible it is that they can be so exact! My grandmother died of metastatic bc in 1981 - she was diagnosed in 1978. Back then it was a slash and burn with no real target -no computerized testing and probably not even any real DNA tests or genetic testing of tumors. she had a double mast. and back then they ripped out everything including chest muscles. She had mets to the lungs within a very short time.
They've come a LONG LONG way. It's really amazing to me. Hang in there- - I believe we're going to be okay!
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Texas Rose: I'm very glad you've joined this group. Your story is one that steals one's breathe. You must be in emotional hell. I have a hard time not seething in anger myself at those 3 doctors. Maybe ( I don't know) an easy medical mistake to make, but still one that shouldn't have been made. I am sorry. How are you feeling in terms of finding hope through this? How is your family? What are your doctors telling you now?
sptmm: Great news that you're doing so well so far! I wanted to add to the Biotene conversation that they also make a mouth spray that you can easily carry with you for when you just need to wet your mouth but can't brush your teeth.
Good luck to all who are starting this week, and, well, good luck to everyone else too!
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Good evening, ya' all! (that is a colloquial way of welcoming our new member = TEXASROSE!!!!!)
Texas-thanks so much for joining us. We are all dotted lines to each other and will support each other through this process of getting healthier.
Debbie- glad your SE's continue to be completely non-existent!
StCards-thanks for the toothpaste reco and the toothbrush information. It is a little fact I totally failed to mention before yesterday so I think I will appoint you co-moderator for following up with more helpful info! Thanks, pal!
Calamtykel- You are absolutely correct in that they have come a long way on treatment and conquering this disease. Even my father, who died in 1999 of lung cancer, went through a much different process than I am experiencing. I think when the cause is actually found it is going to be something simple because cancer is too ubiquitous to not be systemic. Just my thoughts! In any case, glad this is 2010 b/c cancer treatment and understanding gets better every year it seems.
Sohard- by the time we are done I want you to change your screenname to "neverbeensoez!"
Zenith- come out, come out wherever you are! Did you make your list of questions? I am concerned about you!
To all: I did some work on the "list" and I removed the "type" of chemo each person is having. If you all want it listed, what I can do is compile a list and at the end of the month, after we all (mostly) have started so we can keep track of that as well. I am going to welcome your feedback.
Please, all, welcome Texas Rose!
I will be posting a weekly update tomorrow evening to, within the flow of our thread, make everyone aware of who is starting to get healthier in the coming week as they embark on the next leg of this journey to take care of themselves.
Until then....keep smiling, it works!
Liz
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Joining the group here. Will most likely start this month. Had a MX on 7/1, then developed a terrible cellulitis infection. Had to spend a week at Mt. Sinai hooked up to an IV, then my implants were removed and exchanged by the amazing Dr. Jin Chun (shameless plug for him). Now home on IV antibiotics that I do myself and things are looking good. When all is totally cleared up and I am given the green light I will begin 4 rounds of AC and 4 rounds of Taxol which will take me through the end of the year.
I'm pretty terrified. No other way to say it. I had a micromet in my sentinel node but the 15 axillary nodes were all clear. Been to three oncologists and will likely use Dr. Raptis at Mt. Sinai. My follow up with him is 8/13.
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