Starting chemo Sept 05
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Jewelz,
It is illegal to advertise Perscription (spelling) medicine in Australia. So we don't get adds for medicines. I don't see why they should advertise meds to the general public for anyway. You need to see a Dr to get them and if they think you don't need them you won't get them anyway. plus who am I to decide which drug that I need, I didn't go to med school. I don't want some lifesaving drug advertised next to cheerios. that is too big of a decision.
Plus why do they need to advertise, if the drug is good and does what it should, not to expensive then people will buy it any way...
They are not something you can do with out...
If it's just market share they are after then they should be advertising the brand name of the company.eg "roche-were here to help" etc
Nicole -
Nothing new here, will have my 4th AC next Thursday, then on to dose dense Taxol. I am afraid of Taxol and need to look some things up on it.
The worst things for me so far:
1. The shock of losing my hair
2. The terrible hemmoroid I now have to deal with (hurts so bad I am afraid to have a BM) due to just ONE day of constipation.
3. Every two weeks just on schedule on the 9th day I get bad back and esophagus spasms which I have to take lots of Valium and Vicoden for.
4. The 6th day tiredness and near depression.
5. The need to keep foods in stomach at all times for the first 6 days or so after AC chemo.
Other than that I have lots of good days even with dose dense. No "ER room" trips this session so far!
I hope you are all doing fine. I will be so glad to get thru this!
No one seems to know what these back and espophagus spasms are but a woman sitting near me at chemo told me she had them too. Must be chemo or neupogen shot side effects. They start the 9th day and last for 24 hours, then they are gone.,...
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It is funny, you know. I have never asked myself "Why did I get cancer?" "Why me?" etc, but rather, I think "Why not me?" The incidence of diagnosis is increasing, it may as well be me.
I guess I might have thought in the past something like "BC is what happens to someone else." but someone else is a 'me' to themselves. If you know what I mean!
Carol:
Your thoughts are positive and strong. Thank you -
Same here, people ask me all the time if they know why I got it. I tell them just luck of the draw...
according to the stats, Some one has to get it so may as well be me.
Not that I would ever voluenteer for this but I would not wish it on anyone else either. So If my getting it means someone else doesn't then that's sort of o.k
Nicole -
Sorry ladies! I didn't intend to be MIA this past week - time just got away from me. I finished my last A/C last Wednesday! Congrats to Susan and Lisa who were right there with me! This one has been the roughest - I have felt pretty lousy since Wednesday. I had some bad effects from the Nuelasta shot on Thursday and spent most of the weekend at home in bed. That is very unusual for me. I actually did the Making Strides 5 mile walk in Cincinnati last weekend!
I did meet with the rad oncologist on Wednesday as well. I am having an U/S on Thursday to see if I am a candidate for Mammosite radiation. Does anyone have any opinions on this?
I'm with AussieMum on the not questioning "Why Me?". From the beginning of this, it's just been a journey that I am trying to find purpose from. I beleive that purpose is to help other women in my life that may have to face this. The strength and encouragement I have found on this board will certainly help me with that!
Warm thoughts to everyone having treatment this week! -
Aussiemum and Nicole
I have never felt "why me?" either.
I always knew it was a possibility as mum was diagnosed at 47, died of liver mets at 48.
Sandra
Good luck with your treatment tomorrow. Let me know how you get on.
Maxine -
So good to hear from you Hopeful. I agree, this fourth treatment was the hardest, but I think today is the day that I will turn the corner! [Ever the optimist.]
With the cold weather upon us, a hat has become required. The oil prices this year are so high, we have turned off radiators throughout the house.
I have my radiation planning on November 1st, which gives me a welcome break from hospital visits. I am going to use this time to catch up on my client files, and to get rested and strong. If all goes well, radiation should be completed before Christmas.
Good luck to all this week....
*susan*
now decadron-free :-) -
Nicole,
The cost of Neuprogen and Neulasta is certainly very high, but I do have mixed feelings. As you may recall, my sister was a member of a 24-person Phase 1 study; the first to try neuprogen for cancer patients receiving dose dense chemo.
It saved her life. It might be saving mine. It has saved thousands and thousands of AID patient lives [that is what it was developed for.] So, what is that worth?
I don't have the answers, and I certainly HATE the ad campaigns, but the drug itself has made a huge difference. These are the things I ponder as I lie in bed awake at night.
In my case, the hospital is clearly charging the insurance company way too much for the injection, but I am letting them battle that out, at least until someone asks me for money!
The health industry is very complicated. Now that I am embroiled in it for the first time, I can see that there are reasons that so many really smart people haven't been able to figure out the answers.
*susan*
now decadron-free! [but still rambling] -
Peggy,
The Taxotere portion of the protocol would have me worried as well; I have been surprised by the experiences that other women have had. Listening to the oncologists, you would think that this was the 'easy' part. Do you start that this week? How are you feeling now?
Take care,
*susan*
now decadron-free! -
Leanne,
I simply don't know how you are managing your treatments and children while your husband is doing his walk. From here, your plate looks really full. No advise except to get as much sleep as you can, and accept every offer of help that comes your way.
I need to check your website to see how the walk is going.... take care,
*susan*
now decadron-free! -
Well, thanks to Peg's encouragement, I've put some pictures on the bald site. I am technologically challenged, so my first effort was OOPS! a disaster.
You have seen my 'smiley face' before <--, now you can see my 'smiling face'. The 1/2 doz pictures are from the day of surgery onwards. I am numbers 341 - 346
I look forward to seeing more of you! It was great to see more of Peg and Susan, who are such voices of encouragement to us all.
Susan - your hair BC is amazing - but you are just as fab bald.And Peg - that smile could brighten anyone's day!
What I am amazed by, is that in all the pictures, I looked at the head first - but then I looked at the eyes: what happy, strong, beautiful women on the site.
PS I remember someone saying that all the little icons are bald, too! So true! -
AussieMom,
Wow! You are gorgeous!!!! How did you get beauty and humor in one package? And this is with or without hair.....
*susan*
now decadron-free! -
DId I ask myself why? Of course I did...but then I asked why not...mine is estrogen based...and I've always had issues with heavy painful periods, developed an estrogen based fibroid on my uterus, did have my first child until I was 31, wasn't successful at breast feeding, and am 25+ pounds overweight...so why not?
What I am still having trouble with dealing with and understanding is that this should compromise my life. I just started a thread on lymphedema...and you know, I don't want to deal with the local yocals around here in the middle of nowhere NC. I want to see someone experienced in dealing with this. I'm angry about this...not about the cancer or the treatment. I'll get through the chemo and the other treatments...and I feel fortunate that I have insurance that is covering a lot of this.
My daughter brought home an abandoned kitten someone found at college...tiny, tiny, tiny. He (we think it's a he) has claws that are unreal, and I had to explain to everyone I shouldn't pick him up to avoid infection...but how do you explain that to a tiny crying kitten in a big box??? I love all my animals...seven horses, three cats plus one who has sortof adopted us, three dogs and now a kitten. Only the dogs and the kitten are allowed in the house, which is more than enough to make my house dirty and 'hairy'....hmmm, I think I've been shedding more hair than the dogs!!! I think I've going to have to shave my buzz cut...those little short hair hurt when you put something on them or lay your head on the pillow..
Well, off to take care of my horses... -
Hi all
1 more day to go until chemo day.. ugh. Not looking forward to it at all but one of those necessary evils!! Am still feeling very rundown so fingers crossed those WBC are behaving themselves and chemo doesn't get put off. As much as I hate it the idea of this dragging on even longer is worse!
Susan, yep it sure feels like a lot on my plate!! The boys are only (nearly) 3yrs and 5 months so they are a bit of a handful at times but a great distraction. Scott is doing so well on his walk he is due into Sydney 5 days early so has been told to slow down! Thanks for your interest and support.
Janet- Like you I have always had issues with heavy and painful periods and am ER+ and wasn't too great at breastfeeding. I have been reading a great book called "What your doctor may not tell you about Breast Cancer" and it is very much into explaining the role of hormones amongst other things. A pretty good read.
AussieMum- where is the bald site? Would love to check it out and add a pic. Actually I might try to add one to my profile while I am thinking of it.
Oops, meant this one to be a bit longer but the kids are having a yell...
xoxox -
Hi girls!
Well here I'm again I wish I could be online more often but I find really hard to do so many things.
At least now I know what medicines I'm taking. Tomorrow is my 2nd round of chemo and Im sooo scared and depressed my vein is black and with a simple touch it hurts I cant imagine tomorrow with the hypodermic needle ouch and i spend 4 hours conected to this torture. -
Cerridwen,
Will be thinking of you tomorrow. I hope that your nurses are gentle with your hands, and you don't have too much pain during the infusion. Don't forget to drink lots of water, and nibble on some snacks during treatment.
Take care,
*susan*
now decadron-free! -
Today was a good day! I planted a bunch of daffodils, looking forward to Spring. When they come up I'm hoping I'll be on the road to good health again, feeling strong and growing hair!
What a treat to log on tonight to find out that AussieMum has contributed to the Picture forum. When she tips that "smiley face" up, she is indeed a beautiful smiling woman!
Susan, Hopeful, Lisa-Have you been able to celebrate your completion of A/C?
Cerridwen, good luck tomorrow!
I'm in treatment tomorrow, too. I'm dreading it. I've posted all my apprehensions about starting Taxol on other threads to get input from experienced ladies. You know I'll be sharing my experiences with all of you.
Take care all!
Peggy -
How do I get to the bald photos??? I have a couple of good ones to post, too...
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Feeling so down today. This is not what I planned for my life! I wanted at least 3 kids and have an active life with them. The fact of not knowing whether I'll be able to have any more kids really scares me. My onc said to forget about it. But she is not in this position.
I know I am very fortunate. Responding really well to the chemo, no side effects while on meds, and the homeopathic stuff I am taking is giving me so much energy - but I am tired of people staring and treating me as if I am on death's door!!! Yes I am Stage 3, but I DO NOT see that as a death sentence. Stop treating me as if this disease is contagious! Look me in the eye when you speak to me!
As for Medical Insurance - what a load of BS! I just found out that my Medical Insurance will only pay for a third of the bills, since they think that I do not need a specialist surgeon, oncologist or plastic surgeon to get me through this. What have I been paying for? Can just imagine what they are going to say when they get the request for Herceptin - "sorry you'll have to take your chances and go without"?
Sorry for the ranting and raving. Feel better now. My next chemo is next week Friday. 3rd of CEF, 1 more to go and then on Taxotere. Don't know a thing about that.
You are all an inspiration and makes this bearable.
Thank You!!
Liezel -
Peggy,
You are firmly in my thoughts this morning, in between emptying all the buckets of water leaking through my roof! I hope that you do well today with the Taxol; have no unexpected side-effects.
Planting daffodils.... what a wonderful idea that is. We are all looking forward to Spring I think when the bulk of our treatments are behind us.
Take care,
*susan*
p.s. I am throwing a party on Sunday and have invited everyone that pitched in to help over the past three months. I have no idea what food I will serve, but there will be wine on the menu! A small celebration for a small benchmark on my way back to health. -
Liezel,
A big cyber-hug to you.... {{{{{{{{{{}}}}}}}}}}}}}}. None of us wanted this in our lives; but here we are putting one foot in front of the other doing the best we can.
As you are learning, you can't control how people respond to you during all of this; only how you feel about you. People will surprise you. Some peripheral friends will become your staunchest allies, while close friends will disappear because they can't handle you being sick. There is no ryhyme or reason; but I think that they are simply scared. Scared that this could happen to them.
If nothing else, vent away here. We sure get it, and I doubt there is a woman on this thread who hasn't had a bad day or two. :-)
As to Taxol, once again Peggy is leading the way, and will no doubt share her experiences with all of us.
Hang in there, and all the best,
*susan* -
Hi all....
Has anyone heard from monkey9cats [Cheryl] lately? Of course a hurricane just went through Florida, but even so, we haven't heard from her in a while. Would just like to know that she is okay.
*susan* -
Day 2 after my last round of E/C. Yeah! So here goes the rambling.
I now get a shot for red blood cells, I am anemic. Today I get a shot for white blood cells. I think if I get cut I will bleed dust because what color cells are left in there. I am on prescription Prilosec for damaged esophagus and it too causes constipation with everything else.I bought dulcolax stool softner to help, am taking decadron, vicoden and zophran. I hope to have a bowel movement by sometime next week. Just kidding.
As for the what caused the cancer question? Well for me I am pretty sure it all started when I worked for a printing company. Tolulene in paints is one of the highest cancer causing agents there is around. I first had Hodgkins as did 2 other 20 something employees in just 3 years. Another young man died of a brain tumor. One young lady was diagnosed with ovarian cancer. 3 young men produced babies with cancer. That is definitely more than a coincidence within one department of about 75 people. I talked to the retired nurse from the printing co. several years later and she confirmed that they had an extremely high case load of younger people with cancer. So I feel there are deinitely enviromental factors around large plants that use paints causing cancer. The company I work for has many plants around the country and around the world. There are 5 just here in Lancaster, PA. Ok that is off my chest.
Now for the taxanes. I asked my onc nurse while she was admistering my Epi. about them. She actualy made me feel better. Some people get alergic reactions and mostly on the first treatment. Yes they can be scary but your nurses should be watching you closely. If not take a friend. If you do experience a bad reaction the drug is stopped, you are given steroids and benadryl to stop the reaction and then the drip is started up again slower with more saline to dilute it. Even if you have a bad reaction the first time you usually don't have it the second time. Ask what the drip is at and make sure that is where they are dripping it at the second time. As for the nail issue she said it might be good to start taking a b-complex vitamin with more b-6. Don't take just one kind of b vitamin as it will actually deplete the other b vitamins in your system. This is just her advice but I trust her. B-vitamins probably cause constipation too, I don't know but everything else does.
Well I am off the get my Neulasta so maybe I will get more on later. I am so glad to be through these first 4 on time and am actually hopeful about the next. My onc hasn't decided on taxol or taxatere and wether it will be 4x dd or 8x and I am not sure how often. I have issues with hands and feet already from previous chemo. I still hope I am finished by the New Year. -
Jewelz and anyone else interested in the Bald Picture forum, Just send a PM to Timtam (Fumi) and she will send you the URL and the Password. the only requirement is that you have posted at least 10 times. You can just go to look and be inspired. Just wait until you see how beautiful AussieMum is and her family, and her name is Michelle! but if you want to post a picture and have trouble, Fumi can help you out. She's a whiz! Have fun!
Peggy -
Liezel, I hope you're feeling better soon. You sound like a strong positive person, so it will be great to hear more from you. It seems as though you've gotten some tricks to help you through chemo. Please share!
Susan, enjoy planning your party. I'll be toasting you with a cyber glass of wine on Sunday.
Norine, I got my first tx of DD taxol today. I posted my experience on the Taxol thread that I started. There are also Taxol threads on fingernails, bone pain and stomach problems, so you can see how others who have been through it all already deal with things.
So far, so good. But when I posted earlier this evening, I said I had no energy. I think the Decadron is kicking in, so this is turning into what Susan calls "a decadron inspired posting".
There are a few people I"ve been wondering about. Not only Cheryl (I hope the hurricane didn't do too much damage)
Anne Marie,(mom2mcco) are you still out there? I think we were on a pretty similar schedule of treatments. Are you doing okay?
Monique (sewmanythings)How are you doing? We have another poster from South Africa. (I'm still working on my map)
I hope everyone who is having treatments this week has manageable side effects.
And if this is your off week, I hope you're doing great.
Hugs to everybody! (I think I will be taking Benedryl at bedtime!)
Peggy -
Hi September Gangs,
I'm Fumi aka Timtam from July group. As Peggy said, just PM me for the URL, ID and password for our Bald Forum if you're interested. Leanne and Jewels, please check your PM now.
Hugs to you all! -
Liezel,
good luck on round 3 of FEC as we say in Australia, or CEF as you say! No matter how they mix it, still makes you feel YUK!
I have just had my 3rd round of FEC, and have 3 more to go, but am not doing taxotere, so good luck. I don't know anything about it, but there are ladies on this thread and others who will be forging the way ahead of you. -
Peggy,
thanks for giving the photo details. It will be great to put more faces to names.
Fumi is just fantastically clever to have opened this space for us to share.
I was doing playground duty/supervision today - with a sun hat on over my wig . . . the combination was too tight and so a BIG headache followed. The kids don't know I have cancer or that I have no hair! Couldn't take the hat off in case the wig came off with it! There would have been a stampede of kids running and screaming in terror!
(A colleague came out to relieve me and I went to a private place to remove the offending creatures and massage my poor, pink dome.)
I'm carrying a big umbrella for shade next time! -
Thank you all for the words of encouragement! Feeling much better today. Ready to face the world again.
Peggy, no tricks to get me through Chemo! Just drink loads of water before, during and after, and start my Senokot 2 days before. I think I am just lucky to not suffer too badly from the nausea. My hushand has planned a weekend away for us immediately after my next chemo on 04Nov, which is a bit of a waste since I am normally very tired for at least 4-5 days after.
Susan, thank you for the hug... A 4yr olf at my son's playschool asked me yesterday why I wear a bandana. I answered him that I do not have any hair and my head gets cold. His response was just - oh, so you are bald like daddy, and continued playing! If everybody could be like children....
Very excited today! My sister is coming to visit. Have not seen her since dx and the attack of the killer shaver. She is pregnant with her second child, so we'll be have grape juice with our dinner!! How I miss my wine...
Talking about wine, has anybody been having any? I find that it gives me an instant headache, but I have a friend who is nearly finished with 6 x A/C swear by her glass of G&T every night.
Keep well all! -
Hi Everyone
Had round three of FEC yesterday, not doing too bad, didn't sleep very well last night.
Sandra
How you doing?, I hope your treatment went well yesterday.
Aussiemum and Liezel
There seems to be a few of us on FEC, seems like Canada, Uk Aus and Europe do this treatment more often than America.
I am going to get my dear husband to take some photos of me with my "dome" before I lose my eyebrows, they are starting to thin, then I will try and post them on Timtam's site. Hopefully I will be able to work it out!
I did try posting a pic here but didn't succeed, I think my pic was too many pixels...
Well, going to rest now
Have a good day everyone
Maxine
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