Chemotherapy for Stage IV
Comments
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I am so sorry this trip which should have been a pleasure was so ruined by thoughtless, clueless people.
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Kristen, try not to let others ignorance get you down. I've had some that were good friends, or so I thought, just walk away. Their loss - I am still me and you are still you. Don't let that one person get to you; really she is pretty ignorant. Maybe people are looking because they expected you to really look sick and you look good. You flew home for your brother's wedding - don't let the one lady ruin it for you. I always wished I had the courage in those type situations of stepping up on a chair and yelling, "hey, look at me, I flew X miles and I came to celebrate my brother's wedding, here is a toast and anyone want to join me in a good time. Sadly we don't do that but the older I get the more I think I could.
Vent if you need to but I'm sure you look great and your brother and future SIL are glad you came and your parents are always glad to see you.
You were talking about wearing mask - when they gave me my chemo on Tuesday I had to wear a mask and so did the nurse when she tapped the port. Said it was a new policy so neither of us breathed on the port.
Hugs, I'm sure you look lovely; you are looking for peoples reaction too.
Brenda0 -
Thank you Brenda! I figured today in the receiving line I am going to give her a bbbiiigggg hug! It is my brothers soon to be mother in law! I told my brother what happened and he was angry but then I told him not to worry and he said give her a big hug and call her mom, and a big kiss on the cheek! So we laughed about it this morning!
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Kristen, did you give her that big hug and kiss?? I am sure you were beautiful today too. I'm sure your flying to your brother's wedding was so very special to him that it makes up for the hassle of traveling and people with ill manners.
Ladies, can I be having a "tumor flare" from the Abraxane. I hurt so dang bad in my hips and back. I will also admit to you that I have overdone and pushed myself this week to try to get the bedrooms and baths back in functioning order but I'm not just tired - I'm in pain. I'm going to have to ask for stronger pain meds - if this isn't a tumor flare then I think my bone mets pain has really kicked in.
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Hey Brenda,
I think that pain is a side effect.
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Naniam: I'm glad you asked about the "tumor flare." Seems my hot spots ache more now that I'm on Taxol, but I've only read on the boards about tamoxifen tumor flare. Anyway, been wondering about tumor flare too.
Went to get groceries yesterday and this woman kept staring at me. It wasn't the usual "hurry up and look away thing, but a real stare down.
Kristen: Good ole hug will do wonders for her! LOL!
My only daughter got married last night......small, private. I'm thankful for the milestones I get to see. She was in middle school when I was diagnosed with this bc. I didn't know if I would see her graduate from high school and here she is married. Brings me to tears.
Have a good weekend everyone.
Jean
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Ok, Ladies, I thought I was a tough old bird but I can't sleep because of the pain. I get the 2nd Abraxane today and Vicodin 7.5 mgs is not enough to hold me. I hate to admit that but tumor flare or not, don't think we should have to deal with this kind of pain without some relief. If you can't sleep from the pain, then it just makes it worse all day. I actually do better up moving than trying to sleep. I got up and immediately hit the heating pad with my first cup of coffee.
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Naniam,
I've been having trouble sleeping lately from the pain, too. It's like every other night. The one night I'm so tired from being up the night before that I can sleep through. Then the next night the pain wakes me up and there's nothing I can do to get back to sleep. I have one of those heating things that you heat in the microwave. It helps, but I'm always having to heat it back up. Onc says my pain comes from the mets in the lining of the lung so am waiting to start my new chemo (adriamycin) and hope that gets rid of the cancer and the pain. I HATE taking pain meds but find I have no choice. I hope you are able to get some relief. Maybe you shouldn't push yourself so much around the house until the pain abates. Try to take it easy!!!0 -
Kristen - what do you mean you 'can't take this'???? Yes you can....jes leave the ignorant in the dust...you don't need them. They are mostly just ill-informed and you don't have to be the one to educate them. If they cared about you, they'd do their own research and/or JUST BE THERE FOR YOU. This is not a death sentence unless you make it one. You have 2 choices in life......#1) get busy living #2)get busy dying. That's it....that's all there is...simple really, but your choice. Do you have family/friends/church/support group with you or around you that will be there for you during this difficult journey? If not, check with your treatment center. Many places offer incredible help in all areas, from a shoulder to cry on, to house cleaning. Of course, I am here...this thread is here...this has been a great help to me. I hope we can be there for you, but please, if you need more...ask for it. Will keep sending you positive energy and prayers...You Can Get Thru This!
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MemaSue56..Thank you so much for everything you said..I agree 100%..I myself intend on getting busy living!
Jean..Congrats to you and your daughter..my grandson who I have raised since he was 3 graduated on the 25th..my last day of chemo..I did chemo that day..he graduated that night..graduation party the 26th plus company all weekend..Fantastic! And when I first got diagnosed in Jan I did not think I would be here to see that..Making memories!!
Prayers and Blessings to all..I am so glad I found you Beautiful Ladies!!
Terry
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@Terry,
Congrats on your grandson's graduation. What a milestone! I have a 7 year old grandson and he is so precious to me. I don't imagine I will see him graduate but I am busy making memories for him. We have great fun together. I am so fortunate to have visitation with him every other weekend. Cancer can take so much from us but it can't take away the memories we make with our children, grandchildren, family, and good friends.
Kristen, you listen to MemaSue ... Leave the ignorant in the dust. We are here for you!!0 -
Well, did not get to give her a hug at the wedding! I was too busy dancing with my 6 year old!! And with my 9 yr old daughters! They were flower girl and it bridesmaids! BUT I think my brother said something to her because when we were getting ready to leave town she gave me the biggest hug... And come to find out she is dealing with her own scares with the big C, but not breast. I guess she thought that she would catch it...
but oh well, I do know I was sore from dancing all night! Even though everyone at the wedding knew so they did walk around on eggshells, which was quite annoying!
Thank you ladies for all of your words of encouragement!
Some days it feels like it would be easier to just let myself go, that way both my girls and husband can get on with healing and with their life! But then who knows what I would have been able to be here for... High school graduation...first dates... Teaching them how to drive??!! I am trying to keep the faith but it is so darn hard!
Well there are some support groups, just have not had the will to actually go to a meeting, but I know I need to! We are a military family so I do not live close to family, about 13 hr drive, but we do have alot of close friends!
I am hoping to try to get my spirits up if not for me for my beautiful girls and loving husband!
Speaking of husbands, my husband does not talk about whAt is going on with me, to me At all! In fact he spends more time talking to other people about me! We probably say three sentences at the most to each other. But he often goes out to garage to talk on phone or friends for hours! I don't want to pressure him, but what do I do? Has anyone had any experience with this?
On another note, I had my last treatment (for now) yesterday-TCH. today meet with surgeons to decide again about mast vs lumpectomy! Also about surgery for liver. Any advice on this would be great too!
Thanks again for comments! Love u guys!
Kristen0 -
Also, forgot to mention I really want to get busy living but sometimes I forget that I am living... Also got a job offer which is a promotion from my job now, but will turn it down today. I just feel starting a new job at this point would be too stressful. And right now I work with wonderful people and have a great boss! Even though I have not been at work much! Is is bad even though I feel fine the second and third weeks I still don't wanna go to work? I don't want to waste my feeling good time!!???
Kristen0 -
Kristen, you have everything to stand up and fight for and you also have it in you to do this. Does it get us down - yes ! Does it seem overwhelming - YES ! Are you on any anxiety meds or anti-depressants? You need something.
I don't know what the surgeons might recommend in your case but I do remember that for me the stats on lumpectomy vs. mastectomy held basically the same results as far as outcome. My original tumor was something like 3.2 but much larger ones they probably would suggest mastectomy. I ended up with something like a quadrant of the breast removed but that was ok with me. Too, what do you want? Do you want the breast gone or more comfortable if you just had the lumpectomy. I was ask that question before my surgery and I said I wanted to keep my breast if possible. Some women just want it gone - so some of this is your own personal choice.
Kristen, do you try to talk to your husband about any of this? How does he feel about mastectomy vs. lumpectomy? I have had to initiate discussions about my fears and choices that needed to be made. Why and who is he going to the garage and talking to someone for hours? Does he feel locked out and pushed away or just trying to deal with his own fears?
Fitztwins has been here a very long time, she had young boys when her BC and mets was found. She has been through many ups and downs but she is till here - still doing what she needs to do. I think the one thing you need to do is understand that you aren't going to die today or tomorrow - that you have a choice in giving yourself, your children and your husband more time for milestones, laughter and some low points too. It sounds like you are pulling away from work and good people there, your children and your husband - to me classic signs of depression.
Please talk to someone about these feelings - if the military doc isn't in tune with these feelings, then find a local support group and talk to someone. I'm 67 and not ready to give into this disease; we've never had a family vacation but I rented a house for all of us at the beach this year. So will be both son and his family and daughter and her family and us, I want more beautiful memories for my children, grandchildren and my husband and me too. Are the treatments fun - heavens no ! Are they worth it - you bet.
Sending you love and lots of hugs -
Brenda
PS It is also ok to tell me I am all wet and don't have a clue what I am talking about. I am just truly concerned about you.
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Kafontaine, yes you can! Just look at them and smile, Don't let them get you down!
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Kristen,
Sounds like you had a wonderful time with your girls at the wedding. Yes, people probably did walk around on egg shells, not knowing what to say, but you know they were smiling watching you enjoy dancing with your girls. That must've been a beautiful sight and one the girls will always remember. I made a lot of mistakes my first round with cancer. One was in wanting to teach the kids everything I could about life in as short a time as possible .... and here I am, still. I could've slowed down a little. LOL. I also wanted to leave them with lots of memories so we took the Disney World trip and then 5 years later, did it again. Vacations were usually to visit family as money was always an issue. But the family trips were always fun since my brother lives in Jacksonville Beach. They still talk about the fun times. Their first time surfing. Their first raw oyster. Feeding sea gulls. It really is simple things that are so much fun for kids. Being with them and doings things with them shows them that they are #1 in your life. That's the best thing you can leave them with. I hope you will get some help whether through counseling, a support group or anti-depressents. All three were good for me! Will be thinking of you as you go through the decision making process re surgery. Congratulations on completing the chemo. You have a lot on your plate but I think you're up to the task. As to hubby .... mine is the same. He doesn't like to talk about my cancer. Once in a while, I'll cry. He always says, "You'll be fine." I hope he's right but he sure avoids any kind of talk about what happens if I'm not. He doesn't talk to anyone about it. I think he is in denial and if he doesn't think about it, then it can't be true. Ah, so glad I have women friends here on BCO and in my life here. Don't know what I'd do without them. Hang in there, friend!0 -
Okay update from surgeons. First double mastectomy and plastic surgeon will put in tissue expanders for when I am ready for recon. Once I heal from that surgical onc will remove 20% of my liver. Once path is back they will decide on radiation or back on chemo.
Any comments ideas?? Suggestions??0 -
Kristen, check with Coolbreeze....she had part of her liver removed. There is someone else also, but I will have to check threads and get her name. Maybe it is this one, I am really behind in reading.
I did immediate recon and had the tissue expanders. Have a silicone implant and it's doing just fine....wish I could say the same for my natural old saggy baggy side. If I could do it all over again, I would say take them both off so I could be symetrical.....not a biggie complaint I guess, but it matters to me. I had to wait 6 months for the implants, but that was in 1990 so maybe it is different now.
My husband doesn't talk about much of anything except news I am not interested in. I am thankful every day for my friends.
I had my treatment after work yesterday so get this morning off to do nothing since I don't go to work til 1:30 today.....am thinking of changing treatment to late afternoons since the nurses want to go home so get me right in and out and it's great having the morning to do nothing.
Have a good day, ladies. Marybe
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Maybe thanks I did look at Coolbreeze. Will have to send her message! Thanks!!
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Sorry to bother you all but finished last (for now) TCH and now I have a swollen tender cyst in my other breast, painful swollen lymph node in neck and groin! What is going on?? Am I just done with???
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Kfontaine,
NO No NO You are not done with. Do not panic. There could be many reasons for swollen lymph nodes.
YES YES YES Call your doc and share this new info.
PLEASE PLEASE try not to worry til you know what you are dealing with!
On another note, I started the doxorubicin (doxil) today with decadron and anti-nausea meds given prior to chemo. The whole process seemed pretty easy. Took a long nap, ate dinner, played on the net for a while after talking to my mom and sister. Now, epready for bed again. Anyone who took doxil and have any thoughts to share, I'd appreciate hearing from you. My understanding is that it is adriamycin delivered through liposomes that target cancer. Less dangerous to heart and hair this way. I'll keep my fingers crossed!0 -
Glenna- thanks so much! Did go to onc with swollen lymph node to groin. He felt it and said that he did not feel it but his nurse practitioner did feel it- basically they said they would do scan which would probably lead to biopsy which would lead to cancellation of surgery! So I opted to wAit for my onc to return on Tuesday. This morning I woke up and there are 3-4 spots on me that hurt, one being my neck and low and behold a nice pea size lump at every place it hurts! Neck being the worst! I debating calling this morning or waiting til Tuesday!
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I think you should call this morning. Are you on any chemo at all right now? Its odd, when I was on Xeloda, it did not work. New pains popped up daily. Lymph nodes hurt here, then there.
Abraxane zapped all of it. So, these could be popping up because you are not on chemo due to getting ready for surgery. Call the doctors as soon as you can. I find its never good to put these things off. The least you get is some comfort and doctor sense. Hope this all passes soon and you can get back to feeling
As for the liver, I had 40% of mine removed, can't say it was an easy surgery. I can say in two weeks, I was back in my garden. So, there is hope often that we do not realize. Take care. Its going to be allright
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Kristen, I agree....call today so you won't have to spend the weekend worrying.
Glenna, Are you getting both doxi and adriamycin? For awhile there was a shortage of the doxil because that was one of the reasons my onco did not start me on that one.....said he had patients already on it who could not continure because they could not get it.
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Did TCH last (for this round) one on 4 June. Ok gonna try to call! Thanks so much for info on liver surgery.
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Marybe,
I was confused when I said I would be on adriamycin. The way my oncologist explained it to me was that doxil was adriamycin packaged in liposomes so I was calling it adriamycin. I'm still a little confused. He did say doxil was hard to get at one time but now available again. I had the infusion yesterday and it was red. So far so good. Not peeing red yet but they did say it took longer to get into my system packaged this way. Have slept well in spite of the decadron. No SE's yet .... Knock on wood!! They said no hot drinks in the literature. I want my coffee!! Are you still in Florida?
Kfontaine, call sooner rather than later. At the very least you can get your fears relieved!!0 -
Okay Appt at 230 today! I know they are sick of me! I just saw them yesterday!!!
I know they want me to have mastectomy but if lymph nodes are now involved surgery is off the table! But i don't want to sit around and watch all of my lymph nodes swell up, and then have surgery and not be able to go back on chemo! They are really pushing me to not have scans, so I can have surgery. Aaagh!0 -
Kfontaine,
Waiting to hear how your appt went ....0 -
Oh boy you two. so scary. Wishing best for both of you!
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Okay the nurse practitioner at hem onc thinks I am nuts! She scheduled a ct scan Tuesday at 1200! Cross fingers and say a prayer! She did not feel any other lymph nodes like I did! Except for the lymph node in groin. I know if they see anything else I will not have surgery! />She asked me if my anxiety is making me 'feel' these lumps. And I don't know if they are real or not but it is what it is.... So she put me on Ativan and zoloft.....
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