lilymadeline

Thank you for your advice on my mother's situation. I wish you all the best in your own courageous struggle with cancer. You are an inspiration to me.

Thank you

Hi Lilymadeline, I just wanted to thank you for your input on whether to have the last chemo treatment. I am definitely doing it now. The nurse and doctor say for my cancer they don't really know the percentage it would help. For the the first four rounds, I was told it would my cancer from recurring 2%. I know other types and kinds it is higher.

I will keep you in my prayers as you have been through so much. You are a strong warrior. God bless you!

I am going to ask Greg to send you my e-mail. I have some questions I would love to ask you about my planned trip. You are such a sweetheart for talking to me about this. I greatly appreciate this.

Exactly 1 year after I felt the lump in my breast I was finally done with 2 surgeries, godawful chemo, & blistering radiation. Sept,17th. Thought it was blessedly over for 5 or 6 weeks, Pain I decided was my gall bladder got me to a dr. Tests showed cancer in my liver. Now I'm back at Moffitt cancer center & have learned it's in my lungs & lower spine, too. So in 2 days I'm getting my port put back in. Herceptin infusions every 3 wks, & daily pill aromasin. I'm kinda still in a daze, but am a Positive person. How long does this go on????

I don't think you sound harsh.

:-)

Best wishes for enjoying better health in this new year.

I couldn't post this on your question about being tired. I feel for you. Most of us are tired in so many ways-physically and emotionally. Sometimes our support isn't quite there, because they get tired. Our caretakers-and probably our doctors are tired. Many find relief through their faith and religion. Others find peace in different ways. We can help each other by talking here. I'm just passing my first year. My mind is starting to adapt to my new body. I still get very frustrated for various reasons. I'm not a patient person. I mostly get tired of medical staff talking to me, as though I were 8 years old. The best doctors that I have, asked me what I understood about my cancer and the prognosis. That solved much of my weariness in dealing with them, and helped me to trust them better.

I don't know if you need to talk for emotional support and/or information. I don't know if you're fatigued from the treatment. I don't know if something else physical is bothering you. I do suggest that you talk to your doctor. If you already have talked, and want to talk about that, and why that might make you tired-Go ahead and talk to us. Maybe it's the holidays that's making you so tired. When your body changes, or your personal life changes, it can make a person very sad and tired, and the happiness of others makes us sad.

I hope the best for you-that you can find a physical cure for your tiredness, and that mostly your body recovers from the cancer and treatments. I wish that I could ask you over for tomorrow, or if you aren't up to leaving your home, i could bring you over something-and at least give you a hug.

Thank you so much!!! My sister and daughter are nurse's and my oldest son is a medic in the Military. THEY can't believe how badly I have been treated, or should I say ignored. My sister that's a nurse has been a voice beside my voice. She knows the lingo and medical terminology. She is livid that I am pushed to the side, lied to, and made to feel like I don't exist. I will not stop when it's my body and I know what I feel and I know what's been going on with it. We have a local hospital that is huge and the local Cancer Center is owned by them. The Patient Advocate at the Cancer Center is the one that talked to the Oncologist and got me scheduled without a referral. See I told my doctors office on Dec. 13th, that I need a referral faxed to the Oncologist asap so I can make an appt. As of Friday that has not been done. This is how that office has been working! When I see the Oncologist, I will have my list of questions, concerns, what I want, and my feelings. I need a complete blood work panel done asap. From Oct. 1998 til a few months ago, I never had concerns about cancer coming back.....today and every day that goes by could be making something worse, IF the cancer is back. Radiologist had concerns, and nothing was done, nor did I know. Sorry for rambling, it's just scary waiting. I appreciate everything you said in your response to me!!! Thank you and God Bless!! PLEASE explain more about living with cancer as a chronic illness?????

I just want to say thank you!!! After I read what you write, I feel better and find myself smiling I appreciate your thoughts, ideas and your help!! God Bless you!

Thank you so much for your kind words. What you wrote was exactly what I have been dealing with. I decided to come to a support group because I didn't know what to do...had no insight, etc.. I did fear that coming here would make me feel even worse - there are some people who come off as "oh well....it's her decision not yours and you have to honor her wish...and support her even if it means..." Some responses I have read made me tear up and made me even more upset....not so much supportive...but more accepting of the reality that she will eventually lose. So Thank you for not being that way...and being quite sensitive to the matter....because she is my mother and her life is so precious to me.

She does have so much to live for...and I have tried talking to her (various tactics if you will). Telling her how much she has to live for. She has 5 children of her own, 12 grandchildren and 2 more along the way - we have a very large family and we do all care about her. And I am constantly reminding her how important she is to us...she's the glue that keeps our family together. While I do tell her quite often that her decision affects everyone - there's part of me who realizes that "it's her own body and her own decision." I try not to cross that fine line. But she just needs to understand how her decisions affect the family as a whole.

I just noticed that you and I gave very similar advice to someone and it's just nice to know there's someone out with a similar outlook. Lisa

Thanks lilymadeline, You too are an inspiration after so many years of battling breast cancer. We all need to set the bar for those who are following in our footsteps, and who are newly diagnosed with cancer. I will never forget those words..."you have pancreatic cancer." Even though I am in remission I allow myself the time to remember the sorrows of that day. As you well know, our cancer journey never ends. We need to remember that being a survivor means we have another day to live, but we must live it with a purpose. As each of us finds out what are purpose is, we will make it our life's mission. Our purpose Madeline is never ending...it is right here on WhatNext.

My best to you and your family for a Joyous Holiday Season, and a Happy & Healthy New Year...Russ

Merry Christmas Lilymadeline I just read your post and for me to actually go online and check is a big deal lol. I agree with you about how great dogs are. My dog is my lifeline to the great outdoors cause he needs to be walked every single day several times a day. I had tried the lyrica as well as other meds in that field and my body just has horrible reactions to them I get so wired and keyed up that one time when I went to my ladies craft night I was so wired my friends were ready to hang me with the beautiful quilts they were making. I locked myself in the ladies room and just cried I was so upset and keyed up. My dr had found that for me those meds don't work at all. I do have thyroid problems as in it doesn't work so I take meds and after the new year I have appts with both my endo and onc. so I will see if maybe it needs to be upped. Like I said once before I am not doing radiation ( I had it 13 yrs ago same breast cancer the first time) it wasn't and option for me this time around with the triple neg. cancer. I chose not to do chemo because of the damage to my heart that I just couldn't risk. I'm trying to have my life even though I am so tired. Yesterday the small 3 ft prelit tree that I ordered had arrived so I was able to get a small tree up for Christmas and do some very limited decorating, basically just putting out the stockings for myself, the dog, cat and 2 birds. The tree only got like 4 ornaments but they are the ones important to me so at least it feels like Christmas now. I am going to try and muster some energy to do some baking either today or tomorrow. I love to bake cause for me its very relaxing and stress free. I wish you and your family a very Merry Christmas and a Happy Healthy Cancer Free New Year.

Ty for the info. I was taking xeloda while doing radiation m-f.my treatment is over and I saw my oncolgist yesterday and she said not to take my chemo pills. I see the surgeon on the 30th of dec to do a biopsy. I have anal cancer. I had my 2nd petct scan on the 17th of dec. I asked how everything looked and she said the dictation said it had overlay but lol ( non pu intended). She thinks its good. We had decided to wait til after Christmas to start my chemo again but yesterday she said no too!!! So I see surgeon on 30th and when results come back maybe I start chemo. Idk confused...

HI Lilymadeline,

Thanks for posting to my question I walk my pup 3x's a day every day for the min of and hour sometimes more when the weather permits. I have and appt with both my endo and onc. just after the new year so I can ask them about my exhaustion. Its not due to treatment because other than the masectomy I had no treatment this time around. Since I had breast cancer 13 yrs ago and had radiation then it wasn't able to be done this time and I chose not to go the chemo route. For me refusing the chemo route was the right one for me because the drugs used can cause neuropathy and damage the heart. I have neuropathy already and at times its so bad I can't hold a cup as far as the heart being affected I had open heart surgery 40 yrs ago at the age of 11 to partially correct a defect. The thought of taking any chances with my heart just aren't worth it to me. I am a fighter and I live with several life threatening diseases in addition to the cancer but I refuse to give up. I am just so mad that the exhaustion is causing me so many problems. I thank GOD every day for my pup cause he needs to be walked so I get out every single day So thanks for your input on the situation. I wish you and your family a VERY MERRY CHRISTMAS and a HAPPY HEALTHY NEW YEAR.

Thank you for the suggestion. I totally gave up on sex as it was too painful. I felt bad for my husband. Regular lub did not do much. I am estrogen positive and I miss estrogen very very much.

Thank you, thank you for taking the time to answer. I was so overwhelmed when I left the cancer center.

Thanks for responding to my estrogen cream question. I am not too sharp on this site and I tried to answer your question about what A1 I was on, but it got lost! Anyway, I am stage II invasive ductal, estrogen and progesterone positive. I have been on anastrozole (Arimadex generic) for 4 months. I am 63 years old. When I was at my oncologist for 3 month check up, she said she could order me some estrogen cream for vaginal dryness. I later noticed in my survivor guide that the breast center gave me, it said estrogen cream wasn't for people taking aromatase inhibitors. I just wanted to run it by others. Thank you for responding. God bless you in your journey!!

Thank you for all of the suggestions and support regarding chemo brain. I am glad to hear that some treatment centers are openly addressing this issue. There are too many who ignore it or outright minimize it.

Hi lilymadeline. Your post are extremely helpful. Trying to figure out how to live through this diagnosis and treatments. Living with sjogrens and other stuff, the fatigue, the need to gain weight and my children's depression is overwhelming. Today I felt it sucked to be me, but I am glad Im still living. This is such a bad nightmare. You are definitely wise when it comes down to this and I hope i can communicate more with you. I want to move to Maryland with my daughter and trying to figure out how to make it happen. I will need to get set up with doctors for the long haul. She said she would get a bigger place for me and my son to come to. She needs to see that I do fight for my good days when most are so pain stricken. I wished my meds worked better. My pain pills suck. Just want this cancer out of me now!

Thank you so much for posting an answer to my sharing about my experiences today. "Chemo week" is very hard. I am seriously thinking about whether I can continue to work. I see that you are also a "cancer as a chronic illness" survivor. I'm still getting used to this aspect, and trying to wrap my head around what it means without feeling it is a death sentence! I look forward to writing more with you and sharing our experiences.

God bless you!

LInda

I just went to my wall and seen you already answered my message concerning your drugs 30 days ago . thank you for your reply and I should check my wall more often

you answered a question from me about xgeva. what drug are you taking now.? the pain clinic gave me an mri and found I have a heriated vertabre that is pressing on my siatic nerve causing me all this pain. they injected a shot into my spine which did not help'. I get a 2nd one Dec 4th and they think it will help. I had alot of pain before they found the cancer had invaded my bones and lung but not this bad. its mostly a 10 now and oxcos do not help much any more

Hi lilymadeline,

I've been under the weather. Had a simultaneous bout of the flu, bronchitis, and walking pneumonia followed by some vertigo, so am feeling very weak but am delighted to announce that my daughter is engaged to be married in about a year....;)

Thanks for your greeting. I'll be back in fuller force when I'm feeling a bit more up to it.

Warmest wishes,
Aliza

Thank you for your input

thank you for your comment to me about xgeva shots. what drug are you on now.I was getting chemo for the first year but was so sick. now I can hardly walk. told I only had a year three years ago but ready to go as pain is getting unbearable

I've been reading what you wrote about pain. My worst pain is in the back where I have mets in all the lumbar and thoracic vert. Also have had a lot of arthritis for many years there and elsewhere so pain is normal. This week I started seeing a Palliative/Hospice doctor. I don't qualify for Hospice now, but would like his fine-tuning on pain meds. Percocet works fairly well. Doesn't knock all the pain, but I don't remember what no pain is like....like age 30?

Thank you for your posts, for sharing your experiences. I'm adjusting to the fact that I've had so many cancers in such a short time, and will likely have this as a chronic condition. It's a hard pill to swallow! But I am so very blessed, and positive and hopeful. I love how encouraging people are on this site, and your comments to me, and posts to others are so helpful! We fight because we can, because we must. And your fight encourages others. God bless you!

Dear Lord it's Friday again. How many Fridays have I faced with this cancer inside me? I've lost count. But I haven't lost my faith. Because this is the day that every thing turns around for me.

My cancer will be healed this Friday.My pain will go away this Friday. I won't feel sick this Friday.I wont be unloved this Friday. My hair will begin to grow this Friday.I won't want to vomit constantly this Friday.I will thank my doctors and the pharmaceutical companies for all their help this Friday.My family will cry with happiness,this Friday.And I will thank you my GOD for curing me of this disease. This Friday.
I will hear bells in the air and shout horay for me. My eyes open and I wake up. It's only my alarm going off thats right its Friday. I awaken Oh GOD another day with cancer. Oh well I will fight on with GOD at my side and maybe it'll soon be next Friday.the Friday that I'm cured.
BLessings CELLKILLER

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter