Chemo in Sept 08
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genia- my last tx did the ame thing..went out with a bang. Just when i thought i had done okay BANG two weeks later all the neuropathy, nail loss, swelling in my legs..all kinds of stuff to remind me it was still kicking around in there. I have cut my nails down as far as i can. Half are loose, some have black spots and the swelling continues. I need to go to PCP and see if it is from damage from the chemo or what. I can take two fluid pills and it does not touch it. The GOOD part is that it is OVER and it has to be better from here. I soooo hope you feel better tomorrow. HUGS
Juli- i hope the eye problems get better. I have had more floaters but nothing like you are describing. I talked to my eye guys and we decided to tackle the blurry vision ect after the chemo settles down and rads are done. I just have to wear my glasses a whole lot more and am really having a time with dry eyes. They run all the time ( that's the sign of dry eye) glad i worked for an optometrist for seven years and have been able to understand a little of what is going on.
I don't know if i ever told you guys but i went for a haircut about three weeks before being dx'd. She asked me while she was cutting if i was feeling all right. I told her i was stressed but other than that feeling good. She just said "something's going on with you hair" Then tried to assure me the stress was probably it. When i went back for the next cut i was able to tell her about the diagnosis and she told me she knew it wasn't stress. My hair was getting finer, the body disappearing...she said she knew it was something more serious.....It was kind of a twilight zone thing. It is amazing all the ways your body can tell on you because the eyes also can diagnose a lot of illnesses as well.
Oh well time for bed. Have to get going in the am. Work is first and rads tomorrow afternoon.
Oh and I started with the nioxin shampoo tonight. I'll have to let you know how it works.
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Hi Girls,
Genia, sorry you are having an awful time, just look after yourself and you will start to feel better soon.
Juli, you have your hands full too, poor thing, what a lot to cope with. Take Care x
Bettysgirl, interesting story about your hair, good luck with your rads.
Happy Chinese New Year Girls! The year of the OX will be a good one for us all
Singapore Chris x
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had an interesting (NOT) call from my MIL last night and GET THIS- she told me she had talked to a woman w/BC that had rads. She says "the depression will start in about two weeks so you need to go on and get some antidepressants from your DR so you can get them in your system now before it starts" I wasn't real sure to say....I told her that i had enough BP meds to keep me busy for now..add to that zanex (for calls like that!!) and tylenol and ect....I told her i wasn't really interested in another pill to keep up with. She liked to died when i told her i had 5 BP meds to keep up with..anyway it shut her up for a little while!
SOOOO you rads girls LET me know when to cry uncle and get those meds LOL
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Lisa - rads cause depression? never heard that one.
All good news today... ds does not have a hernia, just an infected gland. Antibiotics should take care of that. My onc called and said my thyroid is normal and my echo showed a drop from 56 to 50, still acceptable. I read that the when the number is 44, they will stop Herceptin. Tomorrow I see the Derm.
Hugs to all!
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Hi Girls,
Bettysgirl, just ignore anything you hear that you don't like that's what I do, especially when they are talking rubbish. I suppose they think they are helping us in some wierd kind of way!
Juli, so glad you son is alright, an infection sounds a lot easier to deal with. Good news about your thyroid and your echol. Lets hope your skin hold out too. Keep smiling.
Singapore Chris x
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Still alive here......but wonderin how!!!
I think they double dosed me this time.....it has been really BAD!!!! I have thrush beyond any I have had before.....to the point my tongue is so sore I wanna cry. Eating food is a misery. Like eating sand on everything. I'm using the Nystatin but it is sure slow in working.
I'm not even gonna go into the diarrhea part.
I told my hubby last night.......if this had been my FIRST round of chemo I don't think I would have gone back. Cause it has been rough!
On a brighter note........I'M FINISHED WITH THE NASTY STUFF!!!!!!!!!!!!!!!!!!! If I were a cursing person I would have thrown a few words in there......lol.
hugs and love to you all.....
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Wow, This last Taxol has kicked my butt. I have finished #9....not sure how much more my body can take. My legs just ache and my toes are staying numb all the time now. I am so wiped out this time. On a good note, I heard from my surgeon and we agreed to do a unilateral mastectomy with implant at time of surgery. She spoke witht the plastic surg.....and set up an appt for a consult. I am so glad I can do both at one time. I have never had any surgery before so I am a little scarred, but I am almost at the end !!! YEAH
Genia - It should be uphill from here on....that's what I keep telling myself. I think this week may be my last tx since the SE's are getting worse....woooooo hoooooo !!!!
Party time for all
Trude
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Hi all! Went to the onc yesterday. PET scan showed "something small" near my chest wall where I have an area of fat necrosis, so they THINK that is what it is! (THINK??????) Anyways, once felt nodule on right breast, ordered mammo and US which insureance refused. Spent all day arguing with them and they finally agreed to dothe US. Radiologist couldn't tell if it was scar tissue so suggested an MRI. So now await approval for that. I have gone to my 'happy place' and decided I am tired of worrying (tired of cancer ruining my life) and not going to think abt it. I was approved to go back to work. If i do not go back by 2/1, I will not have a job. So...I will go see my boss this afternoon.
Trude- Glad that you know what will happen next. Surgery ws better than I thought it would be. My imagination and fears were much worse than reality. I had a TRAM and had horror stories abt the pain and they were not true for me! Make a list of questions for the PS bcs when you get in there it is overwhelming and you forget to ask things. And make sure you have someone reliable with you who can remember or take notes for you!
Genia- I wish you felt better! Keep thinking "NO MORE!!!" Sending you hugs!
D
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I had my follow up apt with my oncologist today. I saw my gyn yesterday. I have to have a trans-vaginal ultrasound on Friday. I have a history of a cyst on the left ovary and he wants to see if it is still there. The gyn's opinion is that the ovaries should come out, but he said it is up to the oncologist. My oncologist isn't keen on that. He said the only reason for removing them would be to stop the flow of estrogen, which can be done with Lupron. But, I would have to take the Lupron for a long time and, once you stop the Lupron, the ovaries are still there. If they come out, that is one less place that the cancer can go, in my opinion. Of course, I'm not going to remove everything that can get cancer (although, now I am thinking I prob should have had bilat mast, but that's hindsight), but I've already had a hysterectomy so only the ovaries are left. The onc is going to call the gyn today or tomorrow. I guess the gyn's office will let me know on Fri when I go for the TVU. After the onc and gyn talk, the onc will let me know what hormone therapy he is putting me on. He's leaning toward Tamoxifen which I thought was only used in ER+/PR+ cancers, not ER+/PR-, but he said the PR doesn't matter, just the ER.
Now that the chemo is over, the oncologist is calling the rad onc who will call me to set up my radiation. The sucky part about that is the long drive since there is no place nearby. It is over an hour one way.
I've also been having some right wrist pain and tinglling in my thumb, index and middle finger. He said that it is prob from the Taxol and it should go away on its own. He also said my eyes should get better within 6 weeks.
He also said that I didn't need another mammogram until August on my remaining breast which I thought was strange. That would be a year from the last mammo and I thought we were supposed to have them every 6 months.
He told me my port can come out in a few months.
DH came with me today since it was just a talk about next steps and I thought he'd want to be there for that. After the doctor was done and left the room I started to cry. My husband asked why and I told him I didn't know why. The fact is, I "know" the cancer is still there. I'm prob being paranoid. I've heard that most people have this same reaction, but I can't help it. I'm convinced that it's already metastesized. It may not be logical, but I can't shake the feeling. But, there's nothing I can do about feelings, so I guess I'll just have to deal with it unless symptoms manifest that need to be addressed.
So, I guess my next step is waiting for the rad onc to call and set that up and go from there.
Genia - this last treatment kicked my butt, too. I don't know how, but I managed to gain 6 lbs between 1/5 and today despite having constant diarrhea for 12 days. I'm glad it's over.
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Jane,
I am sorry to hear about your conflicting doctors. Mine are rhe same way. I am just going to wait a little longer before getting my ovaries out. I think we all feel the same, that we still have cancer. It is hard to accept that the doctors actually took it all and we could possibly be cancer-free. I am trying to have a positive attitude as I have seen how paranoid my son is. Every little ache and he is convinced his cancer is back. This is overtaking his life and he is afraid to do things now. No matter what I feel or believe, I am trying to keep my attitude that I am now cancer-free and will be monitored appropriately by my doctors. I do not want this to take over my life. It has been hard enough on my marriage.
D
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When I was diagnosed, my dd asked me to make a list of 10 things I wanted to do before I died due to the onc gloom and doom prognosis. I've done so many things I wanted to, I could only think of 5:
1. I want to go on a Disney Cruise with all of my kids
2. I want to go back to Walt Disney World and go on ALL the rides I was afraid to ride before
3. I want to go to Coney Island
4. I have 2 stories I wrote which are currently with an illustrator. I would like them to be published. (It doesn't matter if it happens before or after I die)
5. I want to take my boys deep sea fishing
Only time will tell
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Jane - nice bucket list!
I had my head examined today (sounds like I'm a nut case LOL) ... no skin cancer this time. yay!
When I got home, I opened a letter from the Breast Center telling me it's time for a mammo. I had a big laugh and called to tell them to put a note in my file that I have bc and am undergoing treatment. Guess they forgot to note that 6 months ago.
Genia, Jane, Trude (and any others w/ SE's) - Hope y'all feel better soon!
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Hi Girls,
Genia, hang in there, youre nearly done!
Trude, glad you have a plan, one more phase coming closer, then over.
Priz, good luck with the MRI, while you are in the machine, count your blessings, or your fantasies as they have become on the rads site.
Jane, sorry you are feeling down, just have a good cry, we are all here for you. x
Juli, glad you have had your head examined and that nothing was found!
Sending positive vibes for you all, sunny warm ones straight from Singapore, be sure to catch them, Jane, extra strong ones coming over for you.
Singapore Chris x
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I think at this point in our respective treatments, we've all gotten to the place where we think that the cancer will never go away, that it's lurking somewhere inoperable...and that our time is either limited, or we're all gonna have permanent butt-prints on a chemo-lounger somewhere. I waffle between believing that I'm so freaking healthy, that nothing can take me down...and then there's the days where I just want to crawl into bed, say my goodbyes and make sure that my kids are taken care of.
I'm tired. Not sleep tired, just bone weary. I want someone else to do this for me...but who would I choose?
I've got three more chemo left...then hour long drives to radiation. Just thinking about that makes me cry. Makes me want to quit.
I'm tired of being strong. I'm tired of people telling me that they're amazed how strong I am. Oh... what they don't know...
Cancer makes a person lonely. I push myself into the shower and cry. I cry into my pillow at night because cancer overloads my plate to the point that when someone asks me what they can do for me, I haven't a clue what to say, rendering me speechless. All I can say, right now, is that touch is needed. Long hugs from people who don't care if they get mascara and snot on their shoulder. Hugs from people who don't care that my babbling doesn't make one whit of sense.
I want to quit, but I want to keep going....beat this monster...but who am I beating it for? Who will I disappoint if I lose?
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Robin - Hang in there, sweetie. We love you and so do an enormous amount of others. Things will get easier, I promise! Big hugs to you (((((((Robin))))))) 0
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Thanks, Juli...I haven't posted too much because everything feeling so...heavy....lately.
Maybe I need to have my head examined, eh?
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Robin - Yes, it's fun to say...they found nothing up there! The best therapy - find something that makes you laugh, even if it is at yourself. Hope you have a good day!
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Hi girls,
I don't post much anymore since I finished my treatments in November. But, I do check in on all of you quite often.
Robin, you hang in there and keep fighting. We are among those who would be disappointed. We all need you around for a long time to help keep this group going. If I were anywhere near you I would give you a big hug. I completely relate to the need for touch, it helps an awful lot. Breast cancer can be a lonely thing. I have a couple of friends who try, but they can't really understand what it's like having never been there. That's what we are here for. We understand. It seems that I have been so tired for so long that i can't remember anything different. You will feel better.
I promise you that you will finish the treatments and that slowly you will start to feel more like yourself again and this will become a memory. And then you can go on to help others going though it.
Chris
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Robin - not only would all of us be disappointed - but think of how devestated your children would be! Not only are you beating it for you & your kids, you're also beating it for all of us too! We love you! XXXXOOOO Wish we could have a group hug!
Jane - have you asked you onc about the Bisphosphates trial? My onc recently went to a conference and their findings are that not only are the drugs preventing mets to the bones, but also soft tissue. Since I am a TN, there were no other drugs for me post chemo (the trial is not only for TNs), my onc said that this was something proactive that I could do.
Juli - good news on the head exam!
SingChris - things for the warm vibes - it's supposed to be 18 degrees here w/snow tomorrow! You are such a warm & positive influence - thank you!
Chris - nice to hear from you again - are you finished with everything?
Genia - hey GF, any improvements at all? I'm thinking about you and sending you "well" wishes.
I caught more than just some rays on the cruise - caught a respiratory virus; completely lost my voice for the last two days - and can barely talk today with out having coughing fits, ugh! Both my parents have it too.
On a more fun note - I dyed my hair, so now I don't feel so bad about all the white hair (did my eyebrows too). The color matches my wig, so I can tuck my hair behind my ears without looking like a skunk (white sideburns). I don't know if it looks that much better, or if anyone else notices, but it makes me feel better and that's the important thing. I also started weight watchers (on my own) and am 8 pounds lighter that my last vist to the onc on Jan 6th....wah hoo! Both issues have given me a boost.
Big warm hugs to all!
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Isn't it amazing how we all think? I never once thought that i would die from this BC. I knew life was going to be hard for awhile, but I never worried that I would die.
We all need to keep positive thoughts when we can, cry when we have to and yell and scream whenever we want. And stick together!
Wink-How much hair do you have? Mine is coming in grey, blonde and brown. I have silver sideburns too!
D
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WARNING: LOTS OF COMPLAINING AND BITCHING!
I don't even know where to begin.....but one thing we all seem to have in common are the same thoughts about dying.....and having cancer.....or it coming back!
I just want you all to know I love you so much....and you have become such a part of my life I couldn't handle it if anything happened to ANY of you. Here I go crying again......that's all I've done for days now. And I'm tired of my husband asking me if I took my "crazy" pill today. I'm taking them.....they aren't helping.
I'm like Jane in the fact I can't get it out of my head that this cancer will take me out of this world at some point. And like Robin....I just feel it's lurking in there....just waiting for the opportunity to resurface.
Physically I am feeling better today.....except I have a sore tongue and some weird sores around my vaginal area. That's a first since I started chemo.......but them suckers hurt and burn!
The one thing that gets my goat.....is when people say....well your done with your treatments. Once you start feeling better you will never have to go through that again. But what they don't realize is that we live with that DEMON that is constantly sitting on our shoulders saying "YES YOU WILL.....JUST A MATTER OF TIME" And you girls are the ONLY ones that understand that feeling.
I'm supposed to be happy.....but yet....I've cried more this week than I have through this whole thing!!! And I've been bitchy and bit my hubbies head off every time he's looked at me. I told him he would probably leave me when this is all over with and my surgery is done. He just feels sorry for me right now and won't leave. I know.....crazy stuff.....but these are the thoughts I have been having.
Oh and the hair thing........it is sooooo thin........I look like an old woman that has lost all her hair.
I feel FAT and UGLY..........sniff sniff........I seriously need to stop typing about right now!!!! lol
hugs and love
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genia- i wish i was there to give you a HUG. I think we all have those lingering doubts in our head. AND i was also a little "lost" as to know exactly how to feel once the chemo was done. People DO think you are home free even though we may or may not have rads. I think they think of rads as not so much a treatment since it doesn't make you sick.
People just don't know what we have to go trhoug. When you add all the hormonal changes to the mix it is all a little overwhleming. The guys don't get it because they don't have the estrogen. They just need to know that when you pit estrogen against testerone the estrogen will beat them every time!!!! LOL
Hang in there girls. We will make it thorugh every step of this TOGETHER!!
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Robin - Genia and all you ladies. I guess we all feel that beat up thing now and again. Me too. I agree, people ask what they can do and I just don't know what to say. They say how strong and brave I am, but they have no idea how often I cry in the shower or my pillow. (the shower is the best as no one can hear) ...My hubby keeps telling me to rest....but I am so lonely and just plain bored.......Genia was right .....LOTS of complaining and bitching here.
My poor hubby was working so hard cleaning last night....his back and feet were killing him but he just wouldn't stop... I think he doesn't know how to make me better and thinks this is the only thing he can do. Unfortunately, he just doesn't clean very well.....not that I'm ungrateful....I am thankful....it's just I feel so guilty that he is carring so much of a load. Ok now I have made my self tired just by thinking too hard.
Still waiting on a surgery date, but my appt with PS is on 2-6. Next Friday. They sure were on the ball. But the hitch is he is not a blue cross provider (my insurance)....so I need to cut a deal on how much extra I will have to pay after blue cross pays. At least I know they will pay something but only about half of his fee....no contract write off. Bummer
Oh well, one more thing to deal with
Trude
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Hi Girls,
Genia, Robin and anyone else who feels low at the moment,there is a good book called Happy for no reason", buy it and read it.
I wish there was something I could say to make you all feel better. I am very lucky as I have a happy disposition and can't stay upset or sad for more than an hour or so and if I do have a bad day or feel like crying, I can't do that for long either, as I am vain and hate the look of my swollen eyes. Why is it that the movie stars who have been crying all night, still look fantastic, ok I know that they haven't actually been crying, but you know what I mean.
I understand that you are finding it hard not to think of the cancer coming back, especially when you are still having chemo, as it does make you feel miserable, but why waste time thinking about that, when you could be planning your new life. Having said that, I remember that I thought I would be reading so many books over the chemo months, but I was just to tired to even do that, my chemo brain just couldn't process the information. I know this is something on you girls will understand. Just try to focus on something good in the future and tell yourself that you will be there to enjoy it.
On the husband front, mine has been wonderful, but I can't help thinking that it is there turn for some hard work! I have said this before, but just look at all the work we have done over the years, for them and the family. I think this gives them an opportunity to take care of us and the family, I know that my husband has enjoyed most of the things he has done with the children that I would usually do. Like taking them to the doctors, hospital appointments etc Everyone is much more self sufficient without me interferring and ordering them around. But that doens't mean they wouldn't want me there. This is a time for self belief, if you are having trouble finding any, why not ask your family to help you out. Ask each person to take a sheet of A4 and write on it all the things they like about you. I can't promise you won't cry when you read it, but I can promise there will be lots of lovely things written and it is good to know what they are, and read it over and over again and push those nasty thoughts away, far far away. We are NEEDED, we are LOVED and we are WONDEFUL!
Genia, a friend sent me a funny bear story this morning, I will go an get it, it will definately make you all laugh.
Singapore Chris x
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Gonna Be A Bear
In this life, I am a women, in the next, I would like to come back as a bear. When you're a bear you get to hibernate, you do nothing but sleep for 6 months, I could deal with that.
Before you hibernate your supposed to eat yourself stupid, I could deal with that too.
When you are a girl bear you birth your children (who are the size of a walnut) while your sleeping and wake to partially grown cute cuddly cubs. I could definately deal with that.
If you're a mama bear, everyone knows you mean business. You swat anyone who bothers your cubs. If your cubs get out of line, you swat them too. I could deal with that.
If your a bear, your mate EXPECTS you to wake up growling. He EXPECTS that you will have hairy legs and excess body fat!
Yup, gonna be a bear.
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Chris,
Love the bear story! I've always said i want to come back as a dog, as mine are treated like royalty. A bear would be good too!
Trude,
Ask lots of questions at the PS. Mine did NOT take my insurance and we worked a deal. I paid him up front prior to surgery. I put in a claim to my insurance with all the appropriate paperwork and they only paid me back $200. It was because I could have gone to someone in network (but I did not like or trust him). I was upset at first, but then told my DH that I was worth every penny and my PS did a great job!
Genia and Jane,
Hope you guys are feeling better! Remember, one day at a time!
D
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Donna, Yes I am done with everything except for the five years of tamoxifen. I had a lumpectomy and mammosite radiation before chemo. I think I may have to color my hair also, as I know what you mean about the white sideburns peaking out from the wig. Congrats on the 8 lb loss.
Singapore Chris, I also had shelves of books I never had time to read, and movies I never had time to watch. Thought I would catch up during chemo. I just never had the concentration level to read a book until I was nearly done. It was like I couldn't get my mind to settle down long enough. Thanks for the bear story, that was a good one.
Everyone, keep coming here to unload. I know that everyone thinks that we are so strong, and we can handle anything, and let them keep thinking that. You have all of us to rant and whine at, and you need the release. I am finally at the point where I see the end of the tunnel and it's good.
Chris
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Chris.....thanks for the bear story. It was very funny.....and I did laugh!
I think I'm doing a little better today......got my fingers crossed anyway.
Hope everyone is having a good day.....lotsa hugs!
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Genia, glad you are better.
I agree with all, my last chemo was yesterday, boy do I feel like crap. I did 10 of the 12 Taxol, but with the neuropathy getting to the point that I could not walk last night, my onc and I agreed the 10 was enough. Can't wait to get a couple of weeks down the road to start feeling better.
Denise thanks for the insight. Not sure what to ask but will read up a little on different surgerys before I go. I know the report I saw today said a tissue expander, not an implant due to the possibility of doing radiation. But my onc said no radiation if I did the mast, but my surgeon seems to think I still need it. I hate being in the middle. Who do you beleive. I really trust my surgeon as she is so involved in research. I think the onc doesn't take the time to think or feel for each pt....we are all just numbers to her. Oh well, the end is getting closer.....no more CHEMO
WOOOO HOOOO I am now ready for a serious cocktail !!!!
Trude
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Dear Trude
whether you need radiation (RT) or not would depend primarily on the size of the tumour and the number of affected nodes. of course there are other factors as well like the Grade, positive margins, ER+/-, extracapsular extension, extensive LVI.
i was on the borderline with 3 affected nodes and a 2.5cm lump - onco said no to RT at first while radiation onco recommended RT. but after doing some research and speaking to a few people, everyone now agrees that I should seriously consider radiation. - have decided to do it.
check out www.NCCN.org. everyone's diagnosis is different and any decision must be based on your histology report.
did this help?
sam (who has 2 more taxols out of 12 left to go!!!)
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