Starting chemo Sept 05

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  • joannar
    joannar Member Posts: 30
    edited March 2006
    Hello everyone!
    I am another one of thoes long lost september sisters that you haven't heard from in a while. Although I haven't been posting, I do come by every once in a while to check how everyone is doing. It is nice to hear that most of us are wrapping up this nightmare of treatments and getting back to life.

    I had my last chemo Dec 30th and I don't need rads. Also I am triple neg so no herceptin or tamoxifin. So I am done with treatments which is great but also kind of scary.
    I had both a PET scan and a CAT scan (just for piece of mind) on tuesday which were both completly normal. I also had my exchange surgery yesterday. I still need to do genetic testing and see an ovarian specialist for survaillance and/or removal depending on the results of the genetic testing.

    Congrats to everyone ending treatments and good luck to everyone with upcoming scans and surgeries. Thank you all for being here and providing a place that helps me feel like I have not been on this journey alone.

    Joanna
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  • lynellb123
    lynellb123 Member Posts: 69
    edited March 2006
    Hello my September Sisters...I was thinking that perhaps we need a new thread since so many of us have completed chemo,or are about to, but I need a way to keep in touch with the many friends I've made along the way..just a thought.
    In reading through the posts I want to acknowledge & encourage all of my friends here going through various trials. Please forgive me if I've excluded anyone..not my intention - but that chemo brain thing is real.

    Liezel,congratulations on finishing taxotere and on your clean scan as well. How are you handling your side effects?

    Manos, I hope that you are able to make the right decision about chemo and that you feel peace of mind, in whatever you choice.

    Leanne, How much fun was the Look Good Feel Better workshop? I also attended one and rec'd great cosmetics that I usually never buy for myself such as Chanel, Lancome & Clinic.

    Maxine, great news about the bone scan...I'm wishing you good test results from here on!

    Tina, Sounds like the Austin job comes with an understanding & supportive boss...that's a benefit that's priceless.

    Susan, thanks for the Physical Therapist advice. How long after finishing treatment did you notice mobility issues? I'm out of rads 1 week & I do have a little difficulty moving. Hope you're having a wonderful time in Paris!

    Marge, Great to see you posting, I'm sorry you had problems with your last treatments but you are done! I hope the effects of the Taxol are waning & that you are feeling better every day.

    Sandra, Hope you're feeling better & I'm holding you and my other sisters in prayer that your funding will come through.I was also sorry to hear about your friend being diagnosed. It sounds as though you have some very treasured friends there, hold tight to them, they're a gift.

    Peg, I was sorry to hear about you having to keep your port in, I was so uncomfortable with mine, I had it out weeks after completing treatment. I hope we'll never need to use it again anytime soon, but the discomfort I felt was a constant reminder of this awful disease. I hope your first week back at work went well, It was a really cold week to head back to the city. You work with such a great bunch of people though, so I'm sure that it felt like a homecoming for you!

    Joanna, How are you feeling after your exchange surgery? My onc. recommended that I switch gynocologists from my general gyno to an oncologist/gynocologist. I guess it's a smart move to switch to a Dr. that specializes in cancer related "issues" but I just want to be done with this cancer adventure and put it behind me. Guess that doesn't happen.

    Sorry for the long post I just wanted to say hi & wish everyone well!
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  • Pegk
    Pegk Member Posts: 389
    edited March 2006

    Hello to my September friends!
    It's great to hear how you're all coming along.

    Bon jour Susan! I hope you're have a wonderful time. I'm looking forward to hearing about your adventures when you return!

    Yes, it's great to be back to work. The commute wasn't so bad. Luckily the snow held off on Thursday until after I got there.
    I'm going without head covering. I wear my knit cap outside, because it's cold. My hair has grown long enough that it looks like an edgy downtown haircut. Somebody on another thread posted this website. We're in style!

    http://cropsforgirls.com/newfile8.html

    It's interesting that some girls will do this on purpose. Of course, they're not middle aged. I do get chilly sometimes, so I have several sweaters with hoods so I can cover up if I need to.

    I'm working 3 days a week, but because of the long hours I usually work between 30 and 40 hours a week. It's the same old thing, but I'm really glad to be back!

    I hope all of you will continue to have successful completion of all of your treatments.
    I'll check back to see how you're all doing.
    Love,
    Peggy
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  • leannem
    leannem Member Posts: 137
    edited March 2006
    Hi guys

    Well the CT scans didn't go as hoped. A solid 4.5 x 4.2 cm mass was found on my liver requiring further testing tomorrow. As well as this there is another mass on in my pelvis and they have recommended further testing to exclude metastatic disease in that region. A third small mass was found on the spleen. The major concern is the liver though as it was the only one that is SOLID. A word we all know is not good when associated with cancer.

    Prayers and good thoughts needed ladies.

    xoxoox
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  • tinkermax
    tinkermax Member Posts: 269
    edited March 2006
    Dear Leanne

    Im so sorry your tests did not go as well as we all hoped.

    Please let us know how you get on with your further tests.

    You have gone to the top of my prayer list

    hugs to you matey

    Maxine
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  • hopeful1
    hopeful1 Member Posts: 54
    edited March 2006
    Leanne

    I'm sorry you are going through this. I am saying extra prayers for you today.
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  • sholroyd
    sholroyd Member Posts: 288
    edited March 2006


    Lynnellb, thank you for such a personal posting.

    Leanne – you have got my prayers, my thoughts, virtual hugs, healing thoughts – you have my everything, please let us know when you get the results that we all want to hear.

    FINAL treatment was a pain in the axx. My veins just gave up on Tuesday. Bless the nurses they tried their hardest in my left arm and kept apologising but my veins weren't having none of it. The only alternative was to try again another day or go into my left (op) arm - I chose the latter. It has been drilled into me not to have blood tests etc in this arm cos of the Lymphodema business. However apparently there is no hard and fast evidence to suggest that a clean needle will cause it and my Oncologist also believed it would be OK, so I went for it. I was just nervous because whatever has been going, I seem to have had it - watch this space ;-). I had a Hickman line to begin with and can certainly see the benefits – unfortunately my body didn’t like the Hickman line (grhhhh).

    Hubby giving me injections for 5 days currently (GSF) to build up my immune system I understand. I could have had the district nurse but it just makes me feel like I have an illness when she comes??!!! Just got to get on with the radiotherapy bit now. Mark up date is 24 March so I think I have a couple of week’s breathing space!

    Well over the next couple of days I am going to start looking at dates as I have to renew my sick note on Monday - starting to think about going back to work, think about sorting out a reasonable eating plan to try and shed some weight and 'think' about giving myself time to build up my emotional and physical strength before I join the rat race. I think I should be able to go back to work end of May/beginning of June. I will be advised by my Dr and Oncologist. Peggy I am glad you are enjoying being back at work – hope I will too? I have decided that when I go back to work, if I find it very stressful and I don’t enjoy my job anymore – I will quit and look for something else – we’ll see.

    Thoughts to one and all.

    Sandra from the UK
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  • marg1
    marg1 Member Posts: 73
    edited March 2006
    Hello Everyone, I am done with Chemo!!! Now it is on to Herceptin every 3 weeks for a year. I graduated chemo school. I am just dealing with the after effects. The nueropathy is still there, poor vision from the taxol, my nails look crapy, I still can't wear closed toe shoes ( I am in flip flops -- good thing summer is coming up), I have a bleeding hemmoroid -- every time I poop -- it is so painful and bleeds. (yeah I freak out and think its colon cancer -- but I sure it is just a hemmoroid -- I see a MD next week but since I just finished chemo I doubt no one will do surgery this soon) other than that I am glad to be done with chemo. Now the paranoia is setting in..... Does anyone else feel this way?

    Leanne -- I am a die hard catholic and pray my rosary every night. I will dedicate my rosary prayer for you tonight. I can't even imagine what your are going through. I will pray that your mass is benign and that God gives you strength and peace in your heart and in your mind.

    Marg
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  • foxxf
    foxxf Member Posts: 171
    edited March 2006
    Leanne- thinking of you, best wishes and thoughts coming your way. Here's prayers for a good result.

    I am currently in Sydney doing rads, have been here 10 days now and I am really missing my Hubby and Kids today. I missed my daughters 9th birthday on Thursday, the first one I have ever missed. It was so hard just to get through the day.

    I just spent an hour checking the cost of flights home and it would be around $300 for 2 days there. If I use the money to fly home (1hr flight-5 1/2 hr drive) then we wouldn't be able to take the kids to all the attractions in Sydney when they come down in 2 wks time.

    I am talking to them on the phone every night but I am not sure if that is making it better or worse (I miss them more after talking to them)

    Oh well I guess that it's just another one of the treatment side effects that I will have to learn to deal with, but to me this has been the worst one of all.

    Marg, congrats on being finished hope your symptoms go as quickly as they came....

    Sandra- Rads is much easier than Chemo. congrats to you to on being done!! When you go for your rads set up make sure you are in a comfortable position when they mark it out or you will pay for it later... Some times I have layed in that posie for 40 mins.

    Sorry for such a long post

    Best wishes to all
    Nicole
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  • jlpd
    jlpd Member Posts: 54
    edited March 2006
    Hello everyone...I've been absent from the board for a while...don't seem to have time at work and my son hogs the computer at home...plus I usually go to bed by 9 p.m. So...

    Leanne, I'm sorry to hear about your test results...I will say a prayer for you and your family. I went out to the another topic area and was reading about different women and how they are coping. It is amazing. I truly feel that there are wonderful cures and hope for everyone!

    Tina...I feel like I'm in a similar type situation. I would seriously consider the job with the insurance. While I love my job, and my insurance is decent, I would love to move back home to be near family (600 miles)...but I feel I have to stay here for insurance reasons (plus I might not be able to find as good of a job up there!)

    I'm in my third month of Femara...don't like it one bit. I have tingling in my hands, and joint pain. BUT on the bright side, once I start moving, it gets better. I'm going to stick with it a bit longer. I've been reading how Femara is used to treat women with bone mets...maybe I can keep them from coming at all if I take the medicine!

    I had my three month checkup...bloodwork with an exam. My doctors did not order any scans when I was done with chemo, except a bone density test. Well, my bilirubin level was up which indicates an issue with my liver/gallbladder. Can't be the gallbladder as I had that out over 20 years ago! So they are doing an ultrasound tomorrow...will an ultrasound really show anything?

    I am so glad to see so many finishing up their chemo...it took me about two months after the last treatment to start feeling like a person again. I still don't have the energy (my last AC was Nov 22) that I use to or the strength, but it will come. My hair is about an inch long, thicker than what it use to be, lots of white and grey with a little dark brown, but not curly at all (drats! I was hoping for curls!)...Take care everyone and I promise not to be gone for so long.
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  • sholroyd
    sholroyd Member Posts: 288
    edited March 2006
    Nicole, thanks for the rads tip.

    Marg – brilliant – hope you get many 10s ;-)

    I am seeing my Doc tomorrow as my sick note runs out on 15 March. With my few set backs I don’t feel ready to face the rat race right now and there doesn’t seem any point in going back until after rads. However I am going to discuss a plan to return to work. How soon after rads do you think I will feel like returning to work folks?

    I have to say my last treatment was definitely the worst and I feel worse than the other ones (yuk).

    Jlpd – thoughts when you go for your ultrasound.

    Sandra from the UK
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  • Calico
    Calico Member Posts: 1,108
    edited March 2006
    Leanne,
    I am so sorry. You must be so scared, please know that you will be in my prayers.
    When will you find out what it is, will they do MRI or PET???

    God Bless
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  • Pegk
    Pegk Member Posts: 389
    edited March 2006
    Dear Leanne,
    I hope you can feel the positive energy flowing your way from around the globe.
    My thoughts and prayers are with you.
    Love, Peggy
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  • Pegk
    Pegk Member Posts: 389
    edited March 2006
    Sandra,
    I'm sorry you had a tough last day, but now you're done!
    On to the next battle. I think you've had more than your share of problems. How about smooth sailing from here on.
    I think you'll find radiation is a breeze compared to chemo.
    Ease back into work when you're ready. If you have that flexibility, so much the better.
    Are you still doing relaxation therapy? Do whatever it takes to help you feel good.
    Love, Peggy
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  • Pegk
    Pegk Member Posts: 389
    edited March 2006
    Congratulations on finishing chemo, Marg!
    I'm sorry about your lingering side effects, but with time things will ease up. I'm afraid the nail business will get worse before it gets better, but it WILL get better.
    I hope your doctors will give you some relief from your hemmorhoids. That can't be pleasant on top of everything else.
    Try not to be paranoid (I know it's easier said than done), but know that your doctors will take care of you.
    Enjoy your husband and children. Use your talent and take photographs. It must be getting nice and warm in Texas now. Spring is coming!
    Love, Peggy
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  • Pegk
    Pegk Member Posts: 389
    edited March 2006
    Hey Nicole,
    I hope your weeks in Sydney fly by and your family will be there to join you before you know it. It's especially hard to miss a milestone like your daughters birthday, but you'll do your celebrating when you're all together.
    I hope you're getting quality time with your sister. Will you be working at that concert?
    Love, Peggy
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  • Pegk
    Pegk Member Posts: 389
    edited March 2006
    Nice to hear from you, Janis!
    You're symptoms from Femara sound similar to my sympoms from Arimidex.
    I find that my hands ache in the middle of the night, and when I first get up I can barely lift my feet, but once I start moving it gets better.
    I had problems with liver enzyme levels during chemo and my onc ordered an ultra sound, then a CT scan. It was suggested to me (by someone on these boards) to cut down on the Tylenol I was taking for the bone pain from Taxol. My onc said I wasn't taking enough to matter, but when I stopped taking it the levels went down.
    One inch of hair! You've got me beat! I'm disappointed, too, at the lack of curl. Mine is straight, fine, and fairly dark.
    Love, Peggy
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  • leannem
    leannem Member Posts: 137
    edited March 2006
    Hi all

    I am sad to say that my MRI results came back with 2 liver spots- mets. I am heading in tomorrow for an appt with my onc to work out a game plan.

    xo
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  • lynellb123
    lynellb123 Member Posts: 69
    edited March 2006
    Leanne, I'm so sorry to hear that your results came back as mets. I understand that there are many new treatments and you are in my prayers that the meds won't cause you any more discomfort.

    This really sucks, It seems so unfair that you've been through so much already! I wish I could reach out and give you a hug, know that we are all pulling for you. Please let us know what course of treatment is planned, and know that you are in my prayers.
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  • lynellb123
    lynellb123 Member Posts: 69
    edited March 2006
    Wow, I'm still reeling from Leanne's news, but I wanted to say hello to my September sisters & wish everyone well.

    Sandra, Sorry the end of treatment had to be so bumpy, I know you'll find rads so much easier to endure. I would suggest to you, rest up and stay away from the stress of work for as long as you are able to. Our bodies have been through so much, rest & healing are in order.

    Marg, Congratulations on finishing your chemo. YAY!!I hope that the lingering side effects get a little better every day. Good luck with Herceptin, I hope you have no negative side effects from that!

    Nicole, I can imagine how sad you must feel not being around your children & family, that is just heartbreaking! How about an after birthday party for your daughter? Celebrate her birthday when you are together, maybe you can make it a double celebration when you finish treatment.

    JLPD,Janis, good luck with your ultrasound, I hope that you get a good report.

    Hi Maxine & Calico, I hope all is well with you!
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  • Calico
    Calico Member Posts: 1,108
    edited March 2006
    Lynne,
    nice hair!!!

    Leanne,

    I don't know what to say. I am so mad. Are you still getting Herceptin?
    I will pray for good results with new medicine that you will take!!!.
    Here is a big [[[HUG]]]]

    All other September sisters.
    I just meant to respond to each of you when I read Leanne's news and I was so shocked.
    Glad to see you are all posting.
    I'm done with rads too and constantly afraid the "other" shoe is going to drop as in bad news.

    God Bless
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited March 2006
    Oh my goodness..... Here I am in France, ready to report in a light-hearted way, and our September Sister has been diagnosed with mets. Leanne.... my heart goes to you in every way imaginable.

    You will be in my every thought and prayer.

    Many hugs.... *susan*
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  • tinkermax
    tinkermax Member Posts: 269
    edited March 2006
    Dear sweet Leanne

    I am so sorry your results were not what you had hoped for.
    I know you must be devastated at having to face more treatment.

    I know from reading these boards they have made great strides in combating liver mets, and I hope the treatment they give you exterminates the B******s.

    Gentle hugs

    Maxine
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  • Pegk
    Pegk Member Posts: 389
    edited March 2006
    Oh Leanne,
    I'm so sorry to hear your bad news. This just isn't fair.
    You're in my prayers.
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  • leannem
    leannem Member Posts: 137
    edited March 2006
    Thank you so much for your heartfelt prayers.

    I met with the onc and I have only 2 options- firstly we will try a herceptin/taxol/gemzar combo which is 2 weeks on chemo and 1 week off for 6 weeks. Pretty full on to say the least. Then I will be rescanned. If there is no change in the tumours then I will be put forward for a xeloda/lapatanib trial and rescanned after 6 weeks. If no improvement my prognosis is 12-18 months.

    So utterly devastated. My boys are so little. I am praying for the strength to beat this. I know i have fight left in me so am trying to have my grieving time and then get up, dust off and fight fight fight.

    I am angry at my onc who when I was diagnosed refused my request for a body scan so we have no idea if these are new or old tumours. How they respond to the first line of treatment will give us more of an idea but in the mean time it is time I won't ever get back.

    So very sad.

    xoxoox
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  • foxxf
    foxxf Member Posts: 171
    edited March 2006
    Leanne

    The words I have to say can not be printed here.

    what a f#*@%ing shit of a deal, it's so not fair.
    curse this bloody thing.

    I am sure you are as shocked as the rest of us. But please remember a battle lies ahead and your boys are the ultimate prize. We are all here anytime you need us.

    Hope the new meds kick a$$ !!

    You can do this!

    Never surrender!

    I may have cancer but cancer does not have me!

    www.thesurvivormovie.com

    Love and prayers
    Nicole
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  • CoffeePot
    CoffeePot Member Posts: 34
    edited March 2006

    Leanne, You've been in my thoughts and prayers constantly since I heard this. I wish I was there to help you with your children or whatever you needed--do you have help with them when you do chemo? Anyway, whenever I start to worry, I like to spend time at the Recurrence and Mets thread--there are so many good stories with successful outcomes and so many brave women over there. I know you have the prayers of the entire board, but you also especially have the prayers of the September Sisters--keep us updated.

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  • marg1
    marg1 Member Posts: 73
    edited March 2006
    Leanne, I am speechless. I am praying so hard for you right now. I know you will beat this. I know it seems unfair but trust in the lord that he planned this for a reason. It may not reveal itself to you right now but your faith now more than ever must not fade. There are times when I question him, but those are the days that I pray harder. You have two beautiful children that need their mommy -- stay strong for them. You are young -- take the most aggressive course and beat this. I think about you often in my day and ask God to be with you.

    Marg
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  • marg1
    marg1 Member Posts: 73
    edited March 2006
    Hello everyone, thanks for all the congrats on finishing my chemo. I hope everyone is doing okay. I am looking forward to 3 more weeks of "staying home" and I am off to the rat race of nursing. I am grateful that I still have a job after almost 6 months but not looking forward the stressful position I was held. They had posted my position back in Feb but no one has been crazy enough to take it. I was offered a different position in the education dept (teaching new nurses all about home health nursing etc.., checking them off on procedures) but if no one take my old job I may be asked to take it back.

    I should not complain -- I have learned that things could always be worse. I think that is what has got me through all these months. They are far more worse situations than mine.

    I pray for all of us daily.

    Anyone heard from Michelle -- Aussiemum.

    Marg
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  • marg1
    marg1 Member Posts: 73
    edited March 2006
    Oh one last thing

    Since most of us are off chemo -- anyone taking any supplements. I use to take -- Co Q enzyme for my heart, Milk Thisle for my liver, Multi vit, one baby asiprin a day. I started taking them again this past week. Anything else I should take? What about fish oil? I don't eat fish as much as I should.

    Marg
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