Breast Cancer that speads

Regi · Posted: Tue Feb 26, 2008 6:36 pm Post subject: Breast Cancer that spreads

I had breast cancer that was stage 2b, it hit my lymph nodes. I had chemo and then radiation. I thought I beat it. I always had back pain after the chemo and was told that its normal usually from the chemo I kept complaining they took an xray and said that I had degenerative joint disease in the back and the cartilidge wore away. SO they gave me pain meds and that was that. Well I had a double mastectomy, reconstruction a tram flap surgery a hernia repair and then I had a stent put in my chest because all my veins collapsed and angio plasty. After all that one morning I woke and could barely walk I went to the hospital in pain and couldnt walk well they did a scan and they found my worst nightmare. I had incurable bone cancer and a fractured femur it spread from my back to my left hip to my left femur and knee and there was a lesion on my rib. I was devastated. I still am. I had radiation and a rod put into my left leg to support it. I lost weight Im 106 pounds this is so devastating to me I have happy marriage and 3 kids and 2 dogs. All my dreams are gone I wanted to move to new house with my husband we put that on hold and now his job is shaky they may lay him off in the spring. I cry all the time. I had radiation again and now I need chemo for 6 months Ive had 3 treatments so far. I go this friday for my fourth. I sit in bed everyday because the doctors are worried I may need a knee replacement and a hip replacement. IM SO DEVASTATED.. I think about dying all the time and even got my will redone. Im scared to die. I dont want to lose my kids or the love of my life my husband we have been together for 12 years. I have 2 kids from my first marriage and 1 4 year old boy with him. I cant imagine dying and leaving them behind. SO its a very sad thing Im young Im 40 now Ive been fighting this since 2003 ... Life has a way of changing on you and what you thought would happen doesnt and the worst part about it is Im afraid to let go. My little 4 year old wouldnt understand,.. Im terminal now. Its scary

brainman · Posted: Tue Feb 26, 2008 8:45 pm Post subject: Re: Breast Cancer that speads

Hi Regi. I am so very sorry about your cancer Sad

. I am very sad for your children as well. I am a brain cancer survivor. Back when I was first diagnosed, I had three little ones. My youngest was a 3 year old son. I hate to think of all the things that I would have missed in there lives had I died back then.

I moved your post into its own thread because that topic was old. I know that some of those members are still around but others are no longer active. I know others will reply to you.

You and your family are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Regi · Posted: Tue Feb 26, 2008 8:55 pm Post subject: Cancer that spreads

Thank you for the response If you dont mind me asking how did they cure your brain cancer thats so amazing. You are so very lucky ,,, You must have gone through alot. I am really praying for a cure but sometimes I just give up. I get tired of thinking about it. Im so scared if someone told me my cancer was gone I cant tell you how I would feel to have this death sentence .. Thanks for your reply

brainman · Posted: Tue Feb 26, 2008 9:13 pm Post subject: Re: Breast Cancer that speads

It does sound like you are experiencing depressing... for good reason! Have you told your medical team about your feelings? Maybe an anti-depressant would help you to enjoy your children for whatever time you still have left.

Yes, I have been through a lot. Mine was originally a low grade glioma (grade II). It treated with chemotherapy. I went for over 13 years before it recurred in 2005. When it recurred it was a grade III. In 2005, I had everything: surgery, chemo, and radiation. My last MRI just last week showed no signs of cancer... just scar tissue from the surgery.

However, that does not mean that I do not have my own "demons" to fight. I am bipolar with moderate mood swings. I know what depression is like. Sometimes, I feel so bad that I just wish I had not survived. Although at one time I was actively suicidal, I am not now. However, I tend to be "passively" suicidal when depressed (wishing that my cancer would return and kill me, for example).

You hang in there and I will too Wink

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Regi · Posted: Wed Feb 27, 2008 8:16 am Post subject: Reply

Well I guess I do get depressed, The drs have me on Lexapro. My hubby says it works I dont see a difference but I take it anyway. I wish I could wake up one day and be cancer free. Also with my 3 kids Im always in bed I feel so bad for them because they basically already lost their mom. You are so lucky in alot of ways I know bi polar isnt fun for you but its better than cancer. I keep acting like Im already dead I have problems with pain killers they perscribe Norco for me but I have to take alot for it to work and I dont want to change meds because these work better than anything ive tried however I run out alot and I go through a horrible withdrawel and sometimes I have to get a script and pay out of pocket its like 360 bucks ,,, Im low again on pain pills so I wont make it to later next month and its frustrating. Its the only thing that makes me feel better somewhat. Have you been given anything for Pain?

brainman · Posted: Wed Feb 27, 2008 12:40 pm Post subject: Re: Breast Cancer that speads

Tell your medical team about your pain. I read your other posts on this subject and it does sound like you need additional help with pain control. I wish I had better advice but I was never in any significant pain.

Best wishes.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Regi · Posted: Wed Feb 27, 2008 2:58 pm Post subject: Pain and Pills

Thanks I wish I didnt have pain but its not only that I wish they never put me on so much medication because now I would need detox to get out of using these pills they are so addictive I shake and sleep when I try to go off of them and I cant control taking them I just have to take them because not only does the pain come back but my body craves them..
So Id have to probably go to rehab ha and that is horrible so I just keep taking them but now I will have to try to skip some days so that it lasts.. Rolling Eyes

brainman · Posted: Wed Feb 27, 2008 3:14 pm Post subject: Re: Breast Cancer that speads

Hugs {{{{Regi}}}} Sad

. I wish there was an easy answer.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Regi · Posted: Wed Feb 27, 2008 3:20 pm Post subject: Thank U

WOW THATS so nice of you thank you I hope your hugs work ..I need all the help I can get,, because I feel like I may die from this and thats sad I love life and living I love my family so much and my dogs I wish someone out there would find a CURE for me.

mymaria · Experienced user Joined: 28 Feb 2008 Posts: 56

Regi,

I am deeply hurt by your diagnosis. But "terminal" is not a given! You need to do the best that you can to make certain that you have active support around you to help you research, question, prod about the treatment that you are getting. Ask about options, options, options. Look into finding clinical trials around the country if answers seem to stop coming. If you are depressed, and it sounds like that you may be, get help for that so that you are as much yourself to continue fighting this.

My wife was diagnosed with metastatic breast cancer back in early December. It had spread to her brain, spine, liver, lymph nodes, bone in cranium, ribs, spinal column, AND she was pregnant! Drs. gave her a very poor prognosis. Didn't have much confidence that she would even make it through pregnancy. But three months later, we have a new daughter, the major cancer masses have disappeared and there is no sign of spread.

I have been a tireless and defiant advocate for my wife. Trying to find out EVERYTHING about anything that would/could help her. We were fortunate to have fantastically compassionate and knowledgeable oncologists working with her. Of course her battle is far from over. It will never be over, but she is going to continue with her life as best she can. I know it! She going to be able to see her son and new daughter graduate, get married, have children, etc. For us, there is no other consideration right now.

I wish I could be with you now to share/help in whatever way I can. It is clear that you have no intentions of packing it in, so don't.

God will do his part. Be comforted by that. I don't know exactly what his role will be, but you need to use whatever strength you have to do your part. Believe me, I thank God for what he has done thus far, but my anger towards him in the beginning was palpable. But I am convinced that he has allowed me to do what I can for myself, my family and, of course, my wife.

Be proactive, pray and you keep fighting this. The LOVE of your family, friends is a POWERFUL motivator. Use it.

I will pray for you and your recovery. Exclamation

Richard

Regi · Posted: Sat Mar 01, 2008 7:27 am Post subject: WOW

You sound like a great person you managed to make me cry, I really am so happy for your wife and daughter and son and family. I just found out yesterday it spread from my hip to my pelvin as well as my left knee, Im going through chemo but I cant help but worry. I try so hard to be positive but there are times when I get tired of it all believe me. Im hoping someday I dont have to wake up and think about cancer everyday its depressing. I have trouble sometimes because i have alot of bone pain and the pharmacists give me such a hard time with pain scripts and stuff and even anti depression meds its discusting. Because my drs say I NEED the pain meds more than anything but you can only get them every 30 days and not before. So sometimes I run out and on top of severe joint pain I have withdrawel its TERRIBLE when I tell you. Its so hard to take the pain. Its a constant fight. I am scared I know your wife had it worse. I just never thought Id ever have this situation I was VERY active I used to dance 3 times a week and work as a manager for JPMORGANCHASE and travel to London ect and the list goes on now Im in bed ALL day I cant even walk my dogs. Its sad. Im happy to hear your story and I cant tell you what it meant to me to hear your story, Good luck to you and your family. And thanks for the advise

mymaria · Experienced user Joined: 28 Feb 2008 Posts: 56

Regi,

I am so sorry for your pain, but please do not resign yourself to the idea that rest equates being in bed only! If you have a patio, balcony, find or create a setup that allows you "rest" under warmth of the sun. (I know that it must be cold in NY right now). Get a walker to allow you maintain some semblance of independence, control of your mobility. Your insurance company may pay for the walker or any other medical assistance item you need at home. Ask your doctor to prescribe them.

I know that it is terribly disconcerting. I had to watch my wife for 2.5 months go through so much pain and discomfort. I cried a lot and I still do just thinking about those images of her. You have a right to be depressed, down, but the key is not to let that control your determination to fight on! Please fight on! I know that you are tired, but let your love for your husband, children drive you. Believe me, you are an incredibly brave and strong person. Believe it!

Richard
_________________
Dallas, TX

Regi · Posted: Sat Mar 01, 2008 8:07 am Post subject: Always trying

I have a wheel chair , cane , walker and crutches but being as independant as I am Id rather scoot out onto my deck for some air. I do that quite a bit but I cant stand for very long and hit the bed again I sleep alot I want to do things shopping was my favorite thing to do but now I cant. SO I just try to do the best I can. Im boring my hubby has been there through every surgery and cried along with me but our relationship has changed quite a bit no intimacy due to all the pain I have and all the medicines its very frustrating. I cant I dont have energy, Next week I will start nuepogen shots in my legs to get my white blood cells up and like I said again the pain meds are very important without them I will be in massive pain so I have to get around all the rules ,,,and make it happen. They have to keep me pain free I cant take pain very well, so thats my biggest issue right now and I hardly eat I weight a big ol 106 pounds its discusting. Oh well I want to go lay down and sleep for awhile I was up at 5am with hip pain.. So maybe some sleep will do it Thanks for the emails its great to hear a success story.

mymaria · Experienced user Joined: 28 Feb 2008 Posts: 56

Regi,

Rest. But you need to make certain that you are getting enough nutrients to maintain some strength/energy. Is it that nothing sounds appetizing? Vomiting concerns? You should already be on anti-nausea medication and there's even a drug that helps to promote appetite. Do you like milk shakes, smoothies, etc. This kind of stuff tends to be easier on the stomach AND by adding whey protein into the drinks, you get vital protein into your system. Whey protein seems to be the most flavorless, so you can add it to a lot of foods/beverages.

Rest.

Richard
_________________
Dallas, TX

Regi · Posted: Sat Mar 01, 2008 8:30 am Post subject: Barely eating

Smells bother me I cant stand and thats my other passion is cooking I LOVE to cook Now my hubby makes pasta for himself everynight he went from eating all his favorites like Chicken stuffed with salami and cheese and metaless meatballs I make with parmesian cheese and bread and garlic its delicious and of course the list goes on I make alot of great meals. And to go from that to pasta has to suck for him. He is 6'2 a tall man with a big appetite. And my dogs are starving right along with us because if I dont cook nobody eats.. so I dont have vomiting because of the anti nausea stuff but theres alot of things youy dont know .. I have a stent in my chest with an angio plasty so I need tons of meds. I take Plavix and coumedin and thyroid and Arimidex, pain patches , pain meds norco..the list goes on..

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