Starting chemo Sept 05

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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    More test results.....

    So far I already knew...IBC, IDC, high grade DCIS, Bloom-RIchardson scale 8/9 (grade 3). I just found out that I am ER+/PR+ and HER2+++. Now I need to look to see what other options I have available. She said I had more treatment options now.

    Tina
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  • cazza61
    cazza61 Member Posts: 34
    edited September 2005
    Hi
    I think its just sinus problems,woke up choking, now all my saliva is thick and hard to swollow or spit out.I have panic attacks and this isnt helping went to chat room for a little while,took my mind off things for alittle while.
    Im starting to feel like a whinger.
    On the lighter side lost my hair about 2 weeks ago all i have left is a few spikes,my partner buzzed it off because i was loosing more hair then my cat who is maulting her winter coat.I didnt know you had so much hair on your head or in the pubic area,dont look that thick down there well I wont have to wax for summer heres hoping leg hair comes out before summer which is in 2 mths here I dont want to shave so have let them grow they are now an inch long will be able to platt them soon.
    Any way hope everyone that had chemo this week went well and remember drink lots of water.
    Love carol
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  • tinkermax
    tinkermax Member Posts: 269
    edited September 2005
    Thats good to hear tina

    More weapons to fight this battle!

    Maxine
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Prayer,

    What a story you bring to your fight against this disease. My heart goes to you in any way that you find useful.
    Quote:

    But this just SUCKS! My hair is the one thing about me I have always loved, long, thick and grows fast. I have been very blessed in this department. I really am going to miss it. Might hang on to it as long as I possible can. In fact I might use super glue! LOL



    Hold on then! There are no wrong feelings here right? I don't think superglue will work though, but for the life of me, I have no idea what the options are! We are each doing this in our own ways, and in this group, I believe we all support each other's decisions.

    Take care of yourself.

    *susan*
    a decadron inspired posting
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Tina,

    What a list of acronyms you have there. So many ways to fight this!!! Are you relieved to finally have a definitive dx?

    *susan*
    a decadron inspired posting
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  • sholroyd
    sholroyd Member Posts: 288
    edited September 2005
    Hi all

    May I join you? I have been posting to the August thread and the girls there have been friendly and helpful but are way ahead of me with their treatment.

    I am from the UK and had a right mastectomy on my husband’s birthday – 28 July. I have (correction had) a grade 3, 17 mm size, 21 lymph nodes removed showing 1 affected, hormone receptive positive. I had a Hickman line inserted on 12 September and had my first dose of Epirubicin on 13 September – it is day 10 and I still have my hair – I tug on it each morning when I wake up. I had told myself I would have it shaved off when I started treatment and had set this up with a hairdresser friend of mine, but as to yet I have just not had the courage to go through with it. My husband and I are going away to Scotland for a few days as from Sunday so he may just end up with the pleasure of shaving my head!

    I move onto CMF after 4 cycles of Epirubicin and then 3 weeks of radiotherapy.

    I was terrified about having the Hickman line in my chest but it was no way near as bad as I anticipated and now after only 11 days I hardly notice it is there and can clearly see the benefits of having it. I also consider myself lucky with the minimal side effects after first treatment – wish me luck for the 2nd on 4 October.

    So if you’ll have me I would like to join with you in whining, singing, crying, laughing etc through our treatment.

    Sandra from the UK (aged 48 yrs)
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    Susan

    Yes I now finally have most of the information to assist the doctors with my care. As you already know I really do not like the place I am being forced to use since I have no health insurance. I actually do like the oncology staff it is the surgeon I cannot stand!I am wondering what I am going to do when that time comes as I do not like the surgeon and may have no choices......

    Tina
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  • cazza61
    cazza61 Member Posts: 34
    edited September 2005
    hi
    bad night here
    posted a couple of times through it
    was wondering if anyone else gets this feeling
    i lay there trying to sleep my body feels heavy and a bit twitchy, my brain is still awake so i can feel every sensation through my body ,I just cant sleep.Am I going crazy,is there something really serious going on in my body,I dont like the unexplained there has to be a reason for it.i just want to cry or run off to the doctors thinking its something wrong
    love carol
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  • tinkermax
    tinkermax Member Posts: 269
    edited September 2005
    Hi sandra from the UK

    Welcome to our group, Im from the UK also, and started chemo the same day as you (FEC x 8), my hair is holding fast at the moment!

    I have a Groshong catheter which i think is very similar to a hickman Line, do you have the tube sticking out of your chest? I do.

    Hope you have a good trip.

    (By the way i'm 41)

    Maxine
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  • tinkermax
    tinkermax Member Posts: 269
    edited September 2005
    Hi Carol

    Sorry you're having trouble sleeping, i've heard quite a few ladies have had the same problem, some have said its down to the steroids they give us on chemo.

    If it continues, you may be best to get something to help you sleep from your doc, there is nothing worse than laying in bed unable to sleep, as the mind starts working overtime, which is not good for us on top of everything else.

    Sending you (((HUGS)))

    Maxine
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  • tinkermax
    tinkermax Member Posts: 269
    edited September 2005
    Hi Tina

    Sorry you dont like your surgeon, I dont like my onc very much, getting information out of him is like "pulling teeth". Are you having bi-lat masts?

    At least once the surgery is done, you wont have to see him anymore ever!

    Have a good weekend

    Maxine
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Carol,

    I am so sorry that you are so uncomfortable. Of course your body needs sleep. My docs have given me Ativan for sleep. May I suggest that you call your doctors. They can help you, really. There is no reason to suffer from these types of side effects.

    Please post back if we can be of any help at all.

    *susan*
    a decadron inspired posting
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Tina,

    I can't imagine being in this position, at all. I adore my surgeon. She is smart and intelligent and a great listener, and I consider myself extremely lucky to have gotten her on my first try. Clearly, there is no easy answer or you would you have already solved the problem.

    How much more surgery will you undergo?

    *susan*
    a decadron inspired posting
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Sandra,

    Of course you are welcome! The September Soul Sisters is a wonderful group of women, and as you have undoubtedly read, we are a diverse group.

    Somehow the idea of your hair being spread across the moors of Scotland made me smile. Scotland is on my list of must-visit places. I have my McMillan tartan kilt just in case I make it.

    Again, please join us. I am looking forward to the singing.

    *susan*
    a decadron inspired posting
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    The problem with the surgeon is I paid a wonderful female surgeon who did the initial FNA. I would LOVE to use her but just cannot afford it since I have no health insurance. I will have at least the left mast...but I am going to ask for a bilateral mast. With everything that is going on in the one I am sure they are just missing something in the right...or it will come back in the other. Three other IBC ladies I have talked to had one then had to have the other one done. I am also a DD so at a minimum would need a reduction in the right.

    My biggest issue with the surgeon...my first visit I had already had the FNA with the wonderful female surgeon and she said I needed a core biopsy. He would not do it. He said it was not necessary since we already knew cancer he would just to a lumpectomy (IGNORING THE FACT 1/3 OF MY BREAT WAS RED AND SWOLLEN) and then do the pathology. I had a total fit as I felt and the female breast surgeon felt it was IBC (or should be treated as such just in case because of the symptoms). Oh and they did do a skin biopsy that was not done right and all 4 stitches pulled...and I had to deal with an open wound for about 3-4 weeks....scrubbing it out with SOAP each day to keep infection away until it finally filled in with scar tissue.... when it came back negative he wanted another one....then his partner (whom might be a better choice) said NO way and sent me to the oncologist. Well as soon as I got there things started moving...he ORDERED them to do it...idiot doc worked me inbetween surgeries...rushed...I felt 4 out of 6 pieces he took even though I complained! (OH and during all this time I have been in a lot of pain just from the IBC and he refused to prescribe pain meds). He missed those 6 times....even though he used to ultrasound... I personally think he was upset he had to do it when he refused to begin with....I had to find another place to have the biopsy done and will have to pay full prioce for it (not on the sliding scale - but well worth it). SHE...(did you notice..she..LOL) did a good job ...did not feel it and got all my pathology stuff from it. This put me even farther behind with my chemo. During all this time (first FNA 8-10 first chemo 9-14) the redness and swelling covered 1/2 my breast...

    Sorry for the long post...but now you see a part of the frustration I have been dealing with...thank god I finally got something to sleep! LOL

    Tina

    Carol ---- Make them prescribe you something I finally got something and the last two nights I have slept more then the last 2 weeks previous! I was sleeping 2-3 hours a night..now 5-6 the first nigth and last night a good 8.
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    one thing I forgot to vent...LOL

    If the idiot surgeon cannot even do a biopsy right....how do I know he can do a mastectomy right!

    Tina
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  • marg1
    marg1 Member Posts: 73
    edited September 2005
    Hi --- Marg here. I DID IT!!!!!. I had my head shaved today. It was really coming out in chunks and I was soooooooo depressed about it. I finally had had it and took control over the situation. I put makeup on and cool earrings and I was ready. I had my husband (videotaping) my two girls and my hairdresser in my bathroom. We went for it -- no tears just giggles and smiles during the whole procedure. I look sooooooo hot!!!!!!! (sorry feeling great about myself right now) I have a great head. I even thinking of going bald all the time. I feel so much better, the loss of control was worse than the loss of hair for me. I feel 100% better about myself. SHAVE IT LADIES !!!!!! Tomorrow we are off to the park to let my hair loose for the birds to nest with.

    I pray for us daily -- Marg
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    WTG Marg!
    As soon as it starts coming out in chunks we will buzz mine off....I always do my SO's so now he can do mine..LOL

    Tina
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Marg,

    What a change in your voice! You sound so vibrant and full of life. My heart is full of gladness for you. You are so strong!

    *susan*
    a decadron inspired posting
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Tina,

    Wow! You know I have followed your story with bits and pieces, but to see it all in one place is overwhelming. How hard you have had to fight to get the care you deserve.

    Your mistrust of this surgeon seems more than justified. How could someone miss so much, and so often? I can't think of a solution, but needless to say you have my complete sympathy and concern.

    *susan*
    a decadron inspired posting
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  • foxxf
    foxxf Member Posts: 171
    edited September 2005
    Had my first Chemo yesterday,

    Went well just felt a little light headed after.

    They didn't explain clearly enough when I should take my nausea meds and
    yesterday arvo I think I left it a bit late cause I started Vomiting. we
    went up to the hospital and got a couple of shots. They explained the meds
    better and how long each one last so I know when to take the next one.

    Wakeup this morning and I am feeling fine with a slight headache. I have
    been feeling Tired all day but other wise well.
    All in all not to bad.


    Nicole
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  • AussieMum
    AussieMum Member Posts: 124
    edited September 2005
    Susan, who are you? Just wonderful to read all the encouraging messages you give to others on this site, while managing your own journey.

    Australia has a PBS - pharmaceutical benefit scheme - which helps to cover the costs of many drugs, Herceptin is not one of those drugs. Health insurance in Australia does not cover medication, so that isn't an option.

    there is an Australian Cancer Council, and it is frustrated by the gap in time between proof that a cancer drug is effective, and inclusion on the PBS.

    I am lobbying the government for inclusion of herceptin on the PBS. There has been a small letter writing campaign from som family and friens, and a petition which has generated over 700 signatures in a couple of weeks. It is not advertised, just a few friends. That is ongoing.

    I have met the government Minister for Health and spoken briefly to him.

    What is the Komen foundation? Don't know it here.

    Thanks again for your encouragement to all.
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    AuusieMom,

    You are so sweet. Who am I? A 46-year old woman who has too much time on her hands! I am self-employed doing some fairly high-end brain work, and my brain isn't working right anymore! And my lovely daughter is now off at college, so here I am!

    I have done a little research this morning, and the links that google generates are very USA based. I did find this however: http://public.roche-oncologyhaematology.com.au/clinical-trials.cfm
    Clinical trails for Roche products. Since the data is very clear that Herceptin is a wonder-drug, a trail would be a way to get the drugs for free. The Komen Foundation seems to be North America only.

    Petitions are great! If I can think of any other way to get you this drug, I will post. [Can you tell that I think you need this drug?]

    Take care,

    *susan*
    pre-decadron dosage
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Nicole,

    No written instructions as you left the hospital? Too bad... good that you went back to get stabilized. Fatique is totally normal for the first days [unless decadron hits you like it hits me!] and resting can help you out. Just don't forget to keep drinking liquids and eating small snacks.

    That has helped me tremendously. Continue to take care of yourself.

    *susan*
    pre-decadron posting
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Now on my second round, I had forgotten how hard I had to work to stay feeling well. Twice yesterday I had waves of nausea when I forgot that two hours between snacks meant two hours between snacks; not 2.5, not 2.25! I will be better about watching the clock today.

    Also found it hard to drink enough. Again straight water made my stomach roil, so I am back to mixing in small amounts of tea and juice into my water to make it paltable.

    The little quiche and meatballs I froze last weekend have already come in handy. And what is it about mashed potatoes that calms my stomach almost immediately?

    My husband is now complaining that he is gaining weight rapidly as he helps with my snacking routine! I eat a tiny portion, while he piles a generous amount onto his plate. This reminds me of when I was pregnant. I gained 20 pounds, he gained 40!

    My daughter had a mild meltdown at college the day I shaved my head. She has a cold, her Mom is sick, she missed her home, and she just needed permission to come home for a weekend. Of course she is always welcome. Now, she may go to a conference instead, but knowing that we were here for her made a big difference in her outlook.

    My hair is now growing instead of falling out. I haven't worn any headcoverings yet outside, and though a few people stare, Boston is such a melting pot of styles, I don't actually stand out that much. Perhaps I should have died my hair in colorful stripes to get noticed!

    Mostly I miss my brain. My short term memory is weak, and I have lost much of my linear thought. This is all about the Decadron, and by Monday I should have a few more brain cells functioning. However, I have had bursts of organizational fits. I have cleaned out my books to donate to the hospital, cleaned out the pantry and swept all the floors.

    What a wild ride this is!

    *susan*
    a decadron-inspired posting
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    Susan
    I also want to thank you susan for all your inspiration. I am normally more like you and the stress of all this has gotten to me. I can also realate to the lack of thought pattern. I have not been able to concentrate much myself. Althought I got a full 8 hours last night (of course...had to get up to pee....drinking to much water..LOL). I also got my emend in the mail from Merck yesterday so I am going to be much better prepared for my treatment on wednesday. I did get some good news yesterday. They are getting close to making a decision on my Social Security Disability. (with IBC they normally approve you the first time...and since I cannot work - and if this first treatment is any indication...house bound for the next three months at least...)

    It is now day 10 and my hair seems to be holding on pretty nicely....and I will be kind of ticked if I don't lose it and I cut it this short...LOL

    Carol -
    What kind of meds to they have you on?

    Nicole -
    Glad to hear things are not so bad. The first 5 days of mine I could not sit up for more then 15 minutes or I would get dizzy and have nausea! What meds did they give you?

    Aussiemum-
    I hope you can get into a trial. My only hope is that the pharmacy companies donate a certain amount to people who cannot afford it here in the states. Do they have anything over there like that?

    Tina
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  • jlpd
    jlpd Member Posts: 54
    edited September 2005
    Carol, I haven't had the sleeplessness...but do wake up with nausea during the night...so I eat a couple of saltine crackers and sip some icewater, all next to my bed. then fall back to sleep. I am FORCING fluids during the day and each time I feel the lease bit queasy, I eat some crackers...the ladies from my church brough dinner last night, and I thought, oh, no...what if I can't eat it...and sure enough I could...it was wonderful! I brought a spreadsheet I had made up with my medications...I was worried I would forget when and how often I should take them...and I went over it in detail...she was very patient describing everything to me. Hey, that's what they are there fore...She suggested taking a Avitan tablet right before bed , then only a 1/2 tablet during the day. Today I'm in day three and I'm tired...SO I'm going to take it easy todya and try not to do anything.

    One question...What is DOSE DENSE? My onocology nurse, said it is getting your AC more frequently, but as mine is every three weeks, it is not considered dose dense. Thanks. Janet
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  • tinkermax
    tinkermax Member Posts: 269
    edited September 2005
    Hi Janet

    Dose dense is chemo every fortnight. from what I can gather some chemo drugs are also given weekly, im not too sure which ones they are.

    Have a good weekend

    Maxine
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    Dose Dense is every two weeks instead of every three. Normally they do it for more aggressive type BC.

    Tina
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  • sholroyd
    sholroyd Member Posts: 288
    edited September 2005
    Hi again all

    Thanks for making me feel so welcome and thank you all for your much-needed tips.

    Maxine – yes my line is in my chest and I am very relieved that it is giving me no bother at all and I can in fact forget it is there on occasions.

    Tina - I am now Day 12 and I have had a few strands of hair come loose today – it would do because I am going away to Scotland in the morning – I have packed wig and hats and the dog’s clippers – I would like to buzz my hair but still haven’t summoned up the courage yet - Marg I am in awe of you.

    Carol – I am also assuming you are more alert because of steroids?? I was advised not to take the last one after 6.00 pm.

    Susan – the drop in brain cells is also driving me crazy – I am usually working flat out teaching adults in a college – I have been told I have to keep away until after treatment because of the infection risk. My concentration has also gone out of the window – it is going to drive me mad.

    Well although I have felt a little down today seeing those few strands of hair, I still have made time to laugh with my two grandsons. My eldest grandson (4) said to me when I remarked on my stray hair strands “Well go and put your wig on then” – I had previously explained that Nanny may be losing her hair for a while.

    Well a little whining but lots of laughter – told it is the best medicine. Speak to you when I get back from Scotland.

    Sandra from the UK
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