Starting chemo Sept 05

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  • Calico
    Calico Member Posts: 1,108
    edited October 2006
    Maxine,
    who are all these lovely ladies???

    God Bless
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  • linny
    linny Member Posts: 204
    edited October 2006
    Marg, I was just browsing some of your galleries - your work is fantastic - such beautiful pictures!

    Linda
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  • tinkermax
    tinkermax Member Posts: 269
    edited October 2006
    Calico

    Left to right their names are Melanie, Gail, Mags, me, Linda, Sue and Andy. I met them all thru chatting in the chatroom here over the past year, and we regularly keep in touch.

    Maxine
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  • foxxf
    foxxf Member Posts: 171
    edited October 2006
    Leanne- prayers and thoughts your way ((hugs))

    Tina congrats on the engagement.

    calico- thanks for asking my new job is going well and looks like developing into something more permenent.

    As for my other health issue I had my ovaries removed around 3 months ago but 3 weeks ago I developed what at first looked like a period (last one Oct 05)

    It stared out as old looking blood which I thought might be a last horah sort of thing but developed into Bright red liquid blood that flowed like a river! I was using the biggest Maternity pads that I could buy and It was so heavy that I had to change them every hour! when I went to the toilet it sounded like I was doing a wee but it was the blood running out.

    This started Sat (finished Tues) by Sunday morning I went to the emergency room. Trying to explain to them that this was not a period but blood was the hardest thing. I joked if I was bleeding out my arm like this I would have been rushed to surgery..lol but because it was "secret womens business" everyone expeceted me to deal with it.

    They checked the meds book and under Arimidex it says may cause Vaginal bleeding so they said to stop taking the meds and go see my Onc. He is quite adamint that it is not the meds and sent me for a blood test and ultrasound with a referal to a Gyno.

    The blood test showed that I am definatley menopausal, the ultrasound was clear but the lining of the uterus should be 4mm and it is 7mm thick. She did a pap smear (bleeding had stopped by then) and as soon as she touched it the cervix started to bleed. it lasted only a few hours this time though.

    So on Monday I am going to have a Day procedure where they can use a camera and look inside the Uterus to see what's going on. Will let you know how I get on. I was might pleased when the ultrasound came back clear let me tell you!

    Best wishes to all
    Nicole
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  • linny
    linny Member Posts: 204
    edited October 2006
    Nicole, that sounds quite frightening. I am on tamoxifen and have been told to watch for unusual bleeding.

    Linda
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  • leannem
    leannem Member Posts: 137
    edited November 2006
    Hi

    Nicole- how awful! I hope the day procedure finds what the problem is and it ends up being nothing to worry about. Great news about the ultrasound!

    Well I really don't know what to say about my situation. Basically we are still unresolved and have no idea what these masses on my liver are. Benign or mets?? Was it ever really cancer??

    I had my mri last thursday and now the radiologist is leaning, very slightly, towards it being a (benign) complex hemangioma which can take on the appearance of mets (or any type of cancer really). I am now off to nuclear medicine on Friday (we hope) for further scanning where they will inject me with, literally, some radioactive material that will ahere to the red blood cells and they will check for blood flow through the area. Blood flow is GOOD- we WANT blood through the mass- like a river. This would mean it is indeed the complex hemangioma. A hemangioma is made up of teeny tiny blood vessels (hence why they really don't want to biopsy) and because they are so small blood flow cannot be detected via ultrasound or mri. Cue the nuclear medicine scan and radioactive material.

    I am trying desperately to not get excited at the possibility of never having mets as I fear it will get ripped away from me but can you imagine?? It will change so so much..... At the same time I must not get cross at my onc if it wasn't mets for all the chemo he gave me!! Holy moly!! Chemo for nothing! All those hospital stays, no seeing children, infections for nothing!! But you now what?? I would do it a million times over if it means I never had mets.

    Please my wonderful, powerful september sisters, pray that this is the case.

    The alternative isn't so great- it is mets, it is aggressive and all the suffering I went through has only held it stable and it is likely to spread soon. Great it is stable but not so great I was told I was NED, no never was NED, it is aggressive etc etc.

    Love
    Leanne
    xoxo
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  • foxxf
    foxxf Member Posts: 171
    edited November 2006
    Leanne- what a see-saw it's either all good or all bad what a choice. If there is any justice in the world the scales will tip in your favour.

    As for the chemo that you didn't really need, while you were in hell up to your eye balls think of it as an added insurance policy in knowing that you did everything possible to stop any mets before they show themselves.

    If it is mets and the chemo held it stable then that is something also you know there is something they can do for you. Consider the prognosis you were given when they first found the liver spots.

    Through out your long ordeal you have shown true courage and endurance that has been awe inspiring. It is a privilage to have you as one of our sisters. Not a day goes by that we don't think of you in our hearts and prayers. Please know that no matter which way the scales tip we are here for you.

    best wishes to all
    Nicole
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  • Liezel
    Liezel Member Posts: 192
    edited November 2006
    Nicole has said it so nicely Leanne. I really do believe that it will all be fine. Do not worry about the radioactive dye they inject. It is not painfull, and it flushes through your body very quickly.

    Good Luck. I continue to think of you and the kids.

    Liezel
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  • leannem
    leannem Member Posts: 137
    edited November 2006
    Hi

    Well I am back from my scan and have some results already thank god. It would appear that the smaller of the 2 lesions is NOT cancer- it is a hemanginoma. A mass that has lots of teeny little blood vessels through it. Definately not malignant. The second one they DONT KNOW. It is not a cyst or blood filled, it is most definately solid. It is still not taking on the appearance of obvious mets or obvious benign so now a fine needle biopsy is an option that we have ruled out blood filled. I am hoping to get news tomorrow of when that will take place. I KNOW my onc will just want to take a wait and see approach but I am not going to do that. I have come this far Ijust need to know what it is. We are looking like 50/50 chance it is mets/benign. So hard to just be patient.

    Anyway that is me. I am sorry I haven't been the most supportive sister to you all -especially of late- but please know that I honestly do always think of you all and check everyday to see how you are all going.

    xoxo
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  • Calico
    Calico Member Posts: 1,108
    edited November 2006
    Leanne,
    that's awesome news so far.
    I will pray pray pray!!!!

    Nicole,
    that's the reason I had them take my uterus when I wanted my ovaries out.
    It might be a little longer recovery but it's worth it.
    It did not make sense at all to leave it in (what's the use anyway, no hormonal, no childbearing, nada...).
    I hope you get this resolved soon. Are they thinking about taking it out?

    God Bless
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  • linny
    linny Member Posts: 204
    edited November 2006
    Leanne, I think of you every day - this sounds like good news, and I hope and pray for you that it is. Who helps you with your little boys now that Scott is away? Do you have a good support system.

    Nicole, I had an ovary removed about 7 years ago (fluid filled cyst, not cancer) - I am 56 and wonder if I should ask for a hysterectomy now, although no one has suggested it. There is a small risk of uterine cancer with tamoxifen use.

    Linda
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2006
    Leanne,

    I agree.... this has been an astonishing story. To have gone through the past year of treatments for METS that might not exist, well, I would be more angry than you seem to be.

    Rooting for benign all the way.

    *susan*
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  • txred9876
    txred9876 Member Posts: 392
    edited November 2006
    Just a quick pop in to read posts while I cannot sleep for some reason. That has been the hardest thing to adjust since being sick.

    My walk is Sunday bright and early. When I went to get the team packets I mentioned I was the survivor listed and then that I had that nasty rare stuff, inflammatory. Well....It looks like I will be finally getting my story out on the local news. The 10pm anchor no less...called me this evening and got part of my story. They are going to film some of the stuff from our walk and then do an interview with me and maybe my daughter.

    I started what I thought would be a part-time job at wal-mart ...but I am scheduled for 40 hours each week. I am doing the best that I can but being on my feet all day has been pure hell.....The neurapathy from Taxol is still there but I don't have any choice I have to be able to pay my health insurance premiums! I am also still waiting on the news from the state about the job I really wanted! At least working I am not sitting and just wondering when will I hear...LOL

    Calico...yes I sent a postcard. I think I sent the one with blue bonnets on it....(dang chemo brain!) Will it ever go away!

    Leanne,
    Your are always in my list of prayers for those that need it most....Keep positive...it sure helps!

    I went totally off the effexor and the hot flashes are horrendous...I hope they go away! I did not like some of the ...um....sexual side effects....I finally had enough....:)

    Has anyone else had stiffness with Tamoxifen? I get achy about an hour after I take it,....and sometimes it lasts for many hours.

    Sorry for the long post!

    Tina
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  • Liezel
    Liezel Member Posts: 192
    edited November 2006
    Leanne, what good news!! I am hoping that the other one also turns out B9. Hang in there! Everything will work out!!

    Nicole, good luck for your procedure on Monday.

    I went in this morning for my Herceptin, and had a problem with the port. After a portogram they said that it has come out, and they'll have to put a new one in. Rather than postpone my infusion, we decided to try looking for a vein. It was extremely painful. My veins are so hard, that when they pulled out the needle after a failed attempt, it did not even bleed. During the last try, they must have hit a nerve or something. It was so sore, that I passed out. How embarrasing!!! Since I drove myself, they could not put me under sedation to try again, so I'll have to wait until I have the new port. Just waiting for the surgeon's office to call back to schedule the surgery. I am so frustrated. Just when you think everything is falling into place....

    I hope you all have a great weekend. Let us know when they are doing your FNA Leanne.

    Tina, good luck with the stiffness...Won't a nice warm bath help for the itchiness?

    Keep well all!

    Liezel
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  • sholroyd
    sholroyd Member Posts: 288
    edited November 2006
    I have caught up with my friends at last – gosh so much to catch up on. I am sending big hugs and positive vibes to Gina during her recovery period and for Leanne to have more good news. It is so annoying Leanne that you have other worries arising again – I think after BC we should be made immune to anything else to upset us in our life – we wish. Leizel I haven’t got a port and they can never get me ‘first shot’ with Herceptin nowadays – I actually get quite nervous when I go.

    Nicole I will be thinking of you on Monday. I had a similar procedure around this time last year and I haven’t seen a ‘sign’ since Christmas Eve.

    Maxine – loved the piccie of the London group – thank you. I love the images you post – where do you find such cuties?

    Peg my wall next to my computer is displaying the postcards – thank you.

    Tina – you are going to be famous – I was on ‘What not to Wear’ but if you blinked you missed me – if anyone watched this programme, what did you think of how it was put together? Tina, you and Peg put me to shame with your walks – must get my act together.

    Here is a birthday card cake for Susan and Leanne, also any other sister who has a birthday coming up – not good for the waistline though ;-)

    http://www.jacquielawson.com/viewcard.asp?code=1016544797586

    I seem to be on a roller coaster ride at the moment. Hubby and I went on a short notice Mediterranean cruise during half-term – seems as if I never really went now, perhaps not the most relaxing of holidays and whilst I enjoyed the change and the excitement of seeing new places and meeting new people I feel perhaps we should have gone for a more relaxing holiday – judging by how I feel after a week back at work. Linda how are you getting on at work now?

    I have had a death of a close auntie, my brother has had a mole removed that proved troublesome (you know what); hopefully he will not need any more treatment now that he has had the mole and clear margins removed; going through with genetic testing (waiting results for BRC1/2 gene first). My daughter moved house yesterday and I am playing ‘nanny’ this weekend and so it goes on…….

    Depression seems to still be with me. Work is proving harder than I thought and whilst I am supposed to be working part-time, it seems to be taking over my life again – I don’t think I am happy in my work currently – the classes I have are large and have a good deal of marking attached to them; redundancy is still in the air making my colleagues on edge.

    Arimidex/Herceptin: Still tired (or is this the effect of work??); joints still a problem, particularly when I get up in the morning; also I sometimes get leg cramp; sleepless nights still a problem; hot flushes are a nightmare – other than that girls I am fine ;-)

    Well as promised I have attached a new photo. My hair still doesn’t look as good as yours Peg. Maxine love the piccie of you and your son and Marg, I am in awe – I would love to be a good photographer.

    I don’t get offered a PET scan on the NHS – umhhhh – must think about this.

    Hugs and best wishes to you all.

    Sandra from the UK

    PS: Leanne I don’t know how you get on – it has taken me an age to sort this post whilst babysitting my one grandson ;-)
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  • Pegk
    Pegk Member Posts: 389
    edited November 2006
    So much going on...
    Sandra, you seem so busy with work, grandchild, vacations, family (condolences on your aunt, best wishes to your brother), medical issues, I'm exhausted just reading about everything you're going through.
    I hope you can find some time in the coming weeks and do NOTHING... just relax!

    Liezel,
    I'm sorry to hear about your port setback. I hope it's resolved soon.

    Tina,
    Good luck with your walk on Sunday. I hope you have great weather. Congratulations on the publicity. You'll be doing a lot of women a favor. If you can send a link to the news report, I would love to see it.

    Leanne,
    I'm praying that all spots in your liver are benign. You deserve a break.

    Nicole,
    Good luck with your procedure on Monday. I hope you'll get some answers and everything will be fine.

    Maxine,
    Thanks for giving us names to the lovely ladies in your picture. I've really enjoyed meeting some of my cyber friends in person.

    I hope everyone has a great weekend!
    For all you Americans, Don't forget to vote on Tuesday!
    Love,
    Peggy
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  • txred9876
    txred9876 Member Posts: 392
    edited November 2006
    Hello everyone...I just got home from my Komen walk here in Austin, TX!

    I had 10 friends and my daughter walking to support me. Also, one couple has 11 month old twins who were along for the ride! One friend actually did the 5K run! We went and shared a meal after and are planning on making this an annual event! Between the two teams of friends (we were a bit unorganized and had two teams instead of one...LOL) we raised almost 2500.00!(with more on the way...we have until Nov 30th to turn in the money.)

    I also had a camera man following the entire walk....before ....during .....and after....they are going to finish the interview sometime this week and would like to include my oncologist. The story is to air sometime in the middle of the month. I will post a link.

    It was hard to fight back the tears when talking to the camera man ....especially when I mention Morgan (age 24..IBC),....she was diagnosed the same month that I was.....I told the story of how ...after finding out about all the time lost to missdiagnosis Morgan was finally diagnosed stage 4....Sadly, she lost her battle last January and left a Husband and two boys (age 1 1/2 and 3)Because of HER...(and others....) I fought so hard for a proper diagnosis and treatment....

    I thank god every day that I am given and that I stay NED..As I sit here....the tears of both joy and sadness are flowing,.....

    As I crossed the starting line today....seeing all the survivor names....and the ones we have lost to breast cancer was very emotional. I mentally said a prayer for each and everyone during my walk......you all
    are never far from my thoughts....

    What an emotional day this has been! I am going to post some pictures
    soon from the race...but ....I NEED A NAP......LOL (the reminder...I
    have not quite gotten all my stamina back!)

    Tina

    PS ....I am not doing this to become famous...(I hate cameras..) I am just so passionate about IBC and finding a cure. I have read that if they find a cure for this deadly kind it could possible END all other forms!
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  • sholroyd
    sholroyd Member Posts: 288
    edited November 2006
    Tina I felt the emotion in your posting. Well done and I will be looking for the link too.

    Sandra from the UK.
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  • foxxf
    foxxf Member Posts: 171
    edited November 2006
    Leanne- screw wait and see! Push your onc to get the answers you need. Ask him if it was his lump would he wait? No bloody way! Hope all goes well.

    Leizel- totally understand the whole port thing. I don't know what I would have done with out mine, no way they were digging in my arm. I too have illusive veins. I dread having blood tests now, they are taking blood from my wrist (near the watch band on the inside) ouch!

    Sandra - if there is anything this whole experience has tought me it is to slow down, if you don't enjoy it don't do it and rest when you need to. Don't be afraid to say sorry I can't, can you help me. This is the life that could have been taken from everyone of us....enjoy it....

    As you all know I am sheduled to have the camera procedure on Monday, well today I have had light bleeding again. I will ph the Gyno in the morning to let her know what is going on but I think that as you all have said a hysterectomy could well be on the cards. whatever I am fine with it, like you said it's not doing any thing anyway.
    will let you know how I get on

    Best wishes to all
    Nicole
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2006
    We fell off of the first page.... so I am bumping. On a deadline, so no time to post a real message.

    Thinking of you all!

    *susan*
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  • foxxf
    foxxf Member Posts: 171
    edited November 2006

    bump

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  • leannem
    leannem Member Posts: 137
    edited November 2006
    Hi ladies

    Well my onc sent me off to another hospital for a PET/CT scan yesterday and the preliminary results were sent today.

    NO CANCER!!!! THE LIVER LESIONS ARE NOT METASTATIC DISEASE!!!!! We know that one is a hemangioma as I already told you but the second, solid mass is definately NOT cancerous either!! Monday will tell us if it is a benign mass such as an adenoma or some scar tissue. Tricky if it is scar tissue as we don't know what caused the scarring- a met or something benign like a cyst?? Given my tumor markers have never risen we are leaning towards BENIGN ALL ALONG!!!

    I am so happy. Thank you so much for your prayers and thoughs. I told you we are a powerful bunch!

    These results certainly raise the issue of how sick I was during CHEMO I DID NOT NEED but at least I am DISEASE FREE!!!!

    love
    Leanne
    xoox
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  • hopeful1
    hopeful1 Member Posts: 54
    edited November 2006
    Leanne - I have tears in my eyes as I am reading your post!!!! I can't express how happy I am for you. It's time to CELEBRATE. Enjoy this weekend with your boys and know that all of us are celebrating with you.

    We ARE a powerful bunch. God bless you all.
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  • marg1
    marg1 Member Posts: 73
    edited November 2006

    Holly Cow Leanne---- Thats WONDERFUL. Great news, I am so happy for you!!!!!!!!!!!!!!!!!!!! Marg

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  • Pegk
    Pegk Member Posts: 389
    edited November 2006
    WOW! Yippee! Hooray!
    It's party time! Leanne I couldn't be happier to read your news!
    Let's all celebrate!

    Nicole,
    I hope we'll soon be hearing good news from you!
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  • Calico
    Calico Member Posts: 1,108
    edited November 2006
    Leanne,
    I am speechless!!!

    You go girl!! Celebrate!!! Hug the boys and the world and start enjoying your life!
    Saying Thank You prayers tonight!!

    God Bless
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  • sholroyd
    sholroyd Member Posts: 288
    edited November 2006
    Hey wow, brilliant news Leanne.

    Ladies I am going to my first ever proper ‘ball’ tonight. It is a posh affair and I am pampering myself like mad. It is a charity event to support the Centre who gave me support last year. I will be having a drink for all of you tonight (not a single drink for each of you of course).

    Nicole, everything crossed for nothing but good things for you. Your posting made me cry (again), but thank you – I realise I am starting to get back to the same pace ‘as before’ and it has to stop.

    Well off to get my glad rags on (saying in the UK).

    How’s things with Gina?

    Speak soon.

    Sandra from the UK
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  • Calico
    Calico Member Posts: 1,108
    edited November 2006
    Sandra,
    sounds like so much fun!! Cheers Nice picture of you!!

    Liezel,
    I am so sorry you are going through so much with your veins.
    I can't imagine.

    Nicole,
    wishing you the best for Monday. Don't worry about surgery, that one was the easiest of all for me, really.

    Tina,
    I look forward to pictures from the walk.

    Gina is back in school with crutches, no weight allowed on the hip yet but pain free, lots of stuff to catch up for her in the homework and missed tests department...

    Thank you all for postcards, we are all drilled about the mail
    Sandra and Marg, I don't know if I thanked you for the postcards. Thank you so much. I am a dizz under stress.

    I have my exchange surgery coming on the 22nd. I am working with 5 lbs dumbells now and my left side expander feels so funky. I seem to strenghten that muscle and it is impossible to lay on that side. Funniest thing if the muscle actually "grows"....besides, that expander is half in the armpit anyway.
    If this surgery happens and nobody gets sick before , I had my expanders for over 14 months...geeeee what fun it was...the PS said the implants are hard to come by due to lots of plastic surgery, he gets only 2 a month right now and we have to share (I said, "does that mean I get ONLY ONE??" ....I was just kidding but we laughed....of course he meant two sets on average...but imagine...lol)

    I also have a PET this coming week but no results until the 30th onc visit. Nothing I look forward too.
    I am not sure if I trust my onc anymore since he had somebody else's HER report in it, not mine. What if it wasn't my PET last time that was fine?? I am so afraid I can't even go there to get a copy to check for myself.

    Peel me of the ceiling, I am just having my normal pre PET break down.

    I hope you all have a fun weekend.

    Leanne, hope you ARE partiing

    God Bless
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  • Pegk
    Pegk Member Posts: 389
    edited November 2006
    Sandra,
    Have a great time at the ball. I hope we'll get to see a picture of you in your glad rags.

    Calico,
    Good luck with your PET scan. I'm sure it will be fine.
    Congratulations to Gina on her return to school. I'm sure she's happy to be back. Tell her to be careful with those crutches. I got a very nice card from her this week.

    My daughter came down with the flu this week. Our family doctor prescribed Tamaflu for her and also wrote a prescription for me. I've never had the flu in my life and even got a flu shot this year, but he thought because of my compromised immune system, I should take it too. So far so good. She's getting better and I feel fine.

    Stay healthy everyone!
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2006
    Leanne,

    I have been thinking about you since your astonishing announcement, and really, I am responding to your second post on the Mets board.

    The responses there were so full of happiness, and the 'move on' mentality, that I worry that your feelings have been invalidated.

    You have, my friend, been through hell for the past nine months, fighting mets that you feared would take you from your children. You had to directly face the fact that your two boys might be raised in separate households, and that your older son might be forced to live with a father that you don't respect.

    As far as I am concerned you are a survivor of mets emotionally. The fact that your doctor misdiagnosed is a different issue [don't get me started on that one] doesn't change the fact the you KNEW you had mets, and that you went through the treatment. And that treatment was hard. I remember you in hospital beds with infections, delayed infusions since your blood counts were so low. Your partner had to face the fact that you might not be here. And I can't imagine that your children didn't know that something was not right.

    Your whole family are in the survivor world.

    This is going to take some time to get over. Move slowly into the realization that your chances for a long life are the same today, that they were a year ago. This may take some time.

    Finding solid ground is going to take some time. You are a survivor, and your strength will help you discover how to move forward with joy.

    I only hope that you will continue to vent here, and let us know how you are doing emotionally. Remember, all of our feelings are valid.

    *susan*
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