Stage IV with mets, are you in the boat with me??
Comments
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Me Too
I'm right there with you Iowa, keep rowing and I'll bring the life jackets!
I was dx'd May 3rd with mets to bone. Vertebrae, both femurs, both axilla and pelvis. This also was not a reoccurrence. Straight out of the bull pen bilateral IDC with mets to bone. To think all I had was a rash and I felt good!
The good news is that I had PET scan on Wednesday of last week and all but the left axilla looked clear for now. That means I will have 1 more chemo in 3 weeks and then either Arimidex Tamoxifen. Yuck!!! But a reprieve from chemo for now. No surgery for us, no rads only maintenence. But we too will survive.
I have 3 grown children and 3 grandchildren, but I also have a 13 y/o at home that needs her mom and I need her to be 13! So we laugh, we joke and try to stay as normal as possible. She's a great kid and a whole lot of fun to be around and I plan to be around her for a long while!
Like I said, I'm bringing the life jackets! But I'll also bring along some grog (whatever that is) to keep our spirits up! Yes pun intended.
Hope and prayers,
Edie0 -
Divingiowasignterp said:scuba diving and boating
well, we all have our downs and at least you know how to function underwater for awhile and hopefully how to come back into the boat when it is time. I actually tried scuba diving earlier this year. I got way too anxious and couldn't trust myself breathing through the gear. I probably will be on a bit of a down later today myself. Please join us on our life boat. Thanks for speaking up.
How are the meds treating you?? any major side effects? is this interfering with your scuba diving?? what a bummer. my one time down, it looked beautiful but i was just too anxious. Bet you have some wonderful photos, too.
good luck on your pulmonologist appt next monday.
Unfortunately my lungs are too compromised to be diving again. I'm hoping I can get to snorkle if I can overcome my new lack of breath problem. I started diving 20 years ago and was nervous at first. I can understand your reaction. When I was able to relax I found it so peaceful and beautiful down there. I've made 594 dives and had a dive trip planned when I got my diagnosis, yuk. But my husband and I always made it back to the boat. Hopefully we'll get to spend some time there.0 -
I will help you too, eveniowasignterp said:scuba diving and boating
well, we all have our downs and at least you know how to function underwater for awhile and hopefully how to come back into the boat when it is time. I actually tried scuba diving earlier this year. I got way too anxious and couldn't trust myself breathing through the gear. I probably will be on a bit of a down later today myself. Please join us on our life boat. Thanks for speaking up.
How are the meds treating you?? any major side effects? is this interfering with your scuba diving?? what a bummer. my one time down, it looked beautiful but i was just too anxious. Bet you have some wonderful photos, too.
good luck on your pulmonologist appt next monday.
I will help you too, even though I only have the one bc.
Hugs, Leeza0 -
life jackets and grogcookie97 said:Me Too
I'm right there with you Iowa, keep rowing and I'll bring the life jackets!
I was dx'd May 3rd with mets to bone. Vertebrae, both femurs, both axilla and pelvis. This also was not a reoccurrence. Straight out of the bull pen bilateral IDC with mets to bone. To think all I had was a rash and I felt good!
The good news is that I had PET scan on Wednesday of last week and all but the left axilla looked clear for now. That means I will have 1 more chemo in 3 weeks and then either Arimidex Tamoxifen. Yuck!!! But a reprieve from chemo for now. No surgery for us, no rads only maintenence. But we too will survive.
I have 3 grown children and 3 grandchildren, but I also have a 13 y/o at home that needs her mom and I need her to be 13! So we laugh, we joke and try to stay as normal as possible. She's a great kid and a whole lot of fun to be around and I plan to be around her for a long while!
Like I said, I'm bringing the life jackets! But I'll also bring along some grog (whatever that is) to keep our spirits up! Yes pun intended.
Hope and prayers,
Edie
Wow, we are definitely getting our own comforts on this boat: life jackets, grog (it has got to taste better than what the doctors/cruise directors are offering!!), and party games!
I have to admit I like your life jackets for the hope that they give for right now. I have a loving husband and my two boys who are now ages 11 and 13 years old at home. I am working on being on this boat until they at least graduate and I can kick them out of the house, grin. I need a sense of normalcy while still understanding the seriousness of my situation. I refuse to wear rose colored glasses but I know that my future is questionable. Taking one oar at a time and finding what humor, love, and support I can is the best way to go.
My diagnosis is rather new, (about 2 weeks now), and will hopefully get my game plan or my route planned out later today and will be able to finally set sail. I was thinking my ticket was on the big cruise ship but you know, I think it will be a little cozier on this little lifeboat. The ride will be a bit rougher, that is for sure, and we will depend on each other a little more but it will be a memorable experience nonetheless.
I am sorry that each of you didn't get the cruise ship ticket you had thought you were getting but thank you so very much for not making it so lonely over here.
HUGS!0 -
NEDiowasignterp said:Welcome aboard!
Forgive me for being a newbie, what does NED mean?? From those mets, I am glad that you are still fighting the fight since 2008. Have the chemo meds been keeping the mets shrinking or not?? I keep hearing the promise that they will shrink many of them. Has that been the case for you??
looking at your profile, you understand why i was saying that it seems that most are on that cruise ship on this site. Harder to find the smaller number in the row boat. But this row boat is bigger than I thought. Keep it up and we might have get the blue prints for Noah's Ark, smile.
NED is a very good thing. It means no evidence of disease so...we all want to be dancing with NED. I know I've been pursuing "him" for years!
I have been stage 4 since May of 08 with ovarian cancer. Then in June of 09 the breast cancer metastisized so I am in the choppy waters myself.
I am currently waiting to be chosen (by computer) to be a part of a study using Gemcitabine & Carboplatin in conjuction with a trial drug called Iniparib which is a PARP inhibitor. It is for a triple negative breast cancer diagnosis...which fits me. I am excited to be a part of this and hope to be chosen very quickly.
I choose to be a place of calm even in the midst of these uncertain waters and so with each new place of dark water, return to that place of calm. The "whirl pool" isn't fun so I get out as quickly as I can.
Anyway, that was the long answer to "what is NED". Sorry to be so long winded!0 -
Post MJ when you get yourmjfromtx said:from San Antonio
Hi, I just got back from MD Anderson today. Was a wirlwind of a week but got some good information and am waiting for the biopsy results. I will do chemo here in San Antonio since my onc here is now in touch with my onc at MDA. I am triple neg so that is a different boat from the others too, but I'm going back to work and living my life as best I can until I need to do something else. Hard on new husband though. I have two options (Ix....and a drug that begins with a C) and abraxane and avastin, then parp inhibitors if those two types dont work. Mets to lung, lymph nodes and abdomen near the adrenal glands. Waiting on biopsy results from MDA to come in next Tues or Wed. Then see what I do to begin chemo again. No surgery though. Can I join this lifeboat? Maybe we can play some shuffleboard and turn this into a cruise and party!!!!!!!! MJ
Post MJ when you get your biopsy results. Praying for good news!0 -
You are one amazing survivordeanerick said:hi ....same passenger here in houston texas
I thought md anderson is the best place for me but unluckily chemo gave up on me. been diagnosed in june 2008 stage 3 and recurrence in january 2010 with stage iv, no hope for radiation, no hope for surgery and no hope to cure. I don't know what else they can give me. I will have appt. to my research doctor this end of this august. My tumor is growing and from my last ultrasound the it hasn't spread yet. but it hurts and sad what would happen next.
We keep fighting and believing in God.
take care.
You are one amazing survivor RE!
Hugs, Jan0 -
boat people
I am on the boat.For such a small boat it sure is hard to find everybody.I am heading for mast in 2 weeks.After 4 months chemo they say I'm ready.My biggest concern is pain now when pet scan is supposed to be negative. Can you relate? Did you have increased pain between chemo and surgery? I have been off chemo 5 weeks and the pain is there with no tumor and worse than when it was there.0 -
Pain between chemo and surgery?Babysteps said:boat people
I am on the boat.For such a small boat it sure is hard to find everybody.I am heading for mast in 2 weeks.After 4 months chemo they say I'm ready.My biggest concern is pain now when pet scan is supposed to be negative. Can you relate? Did you have increased pain between chemo and surgery? I have been off chemo 5 weeks and the pain is there with no tumor and worse than when it was there.
Babysteps,
welcome to the boat. hmm, can you tell us a little more about your cancer and what meds you have been taking?? I have heard that Zometa, the bone hardener is supposed to increase the achiness and pain. I will find out for myself on Friday. Is that one of the ones you are taking?? I also have a lump near my mastectomy site that was slightly painful but ever since they did the biopsy on it, it has been much more painful. Have they been messing around with your tumor site?? I am hoping that you talk to your doctor regarding any pain and see if it is a side effect of any other treatment that they are giving you. I am also hoping that a few other of our boat people can answer your concerns. Give us a few more details if you know them. Has it spread very far into your bones?? Perhaps it is the lymph nodes that are giving you problems. That again would be a good question for your doctor.
Let's hope you get a few new opinions! Welcome again to the discussion boards and to our little boat.0 -
oopsBabysteps said:boat people
I am on the boat.For such a small boat it sure is hard to find everybody.I am heading for mast in 2 weeks.After 4 months chemo they say I'm ready.My biggest concern is pain now when pet scan is supposed to be negative. Can you relate? Did you have increased pain between chemo and surgery? I have been off chemo 5 weeks and the pain is there with no tumor and worse than when it was there.
double post.
please do feel welcome here. Thanks for speaking up!! It is nice to know you are not the only one going through this alone.0 -
You are never alone withiowasignterp said:oops
double post.
please do feel welcome here. Thanks for speaking up!! It is nice to know you are not the only one going through this alone.
You are never alone with this board of great sisters!
Hugs, Lex0 -
Pain between chemo and surgeryiowasignterp said:Pain between chemo and surgery?
Babysteps,
welcome to the boat. hmm, can you tell us a little more about your cancer and what meds you have been taking?? I have heard that Zometa, the bone hardener is supposed to increase the achiness and pain. I will find out for myself on Friday. Is that one of the ones you are taking?? I also have a lump near my mastectomy site that was slightly painful but ever since they did the biopsy on it, it has been much more painful. Have they been messing around with your tumor site?? I am hoping that you talk to your doctor regarding any pain and see if it is a side effect of any other treatment that they are giving you. I am also hoping that a few other of our boat people can answer your concerns. Give us a few more details if you know them. Has it spread very far into your bones?? Perhaps it is the lymph nodes that are giving you problems. That again would be a good question for your doctor.
Let's hope you get a few new opinions! Welcome again to the discussion boards and to our little boat.
I have not had a bone scan yet. In april 2010 I was dx with inflammmatory breast cancer with mets to the mediastinum and nodes.I had 4 mos of Taxol and Avastin.I have to be off Avastin 6 weeks before the mast.The pain in my affected breast lymph node area has been increasing since the end of chemo.My surgeon said some tenderness is to be expected.0 -
Will I tip your boat?
I am Stage 4--mets to ribs. Been out of town. Is it too late to join?0 -
oh, it is never too late to join!!!!!!CypressCynthia said:Will I tip your boat?
I am Stage 4--mets to ribs. Been out of town. Is it too late to join?
Well if you tip the boat, you can help bail water with the rest of us, grin!!! Welcome aboard, it is so nice to see a few more passengers on this boat. It is a rather scary and adventurous ride but always better with friends!! Originally this ride looked a little lonely, but since I have started this thread, it feels so much better to know who some of the other experienced sailors are.
I have mets to the hip and vertebra and just set sail with xeloda yesterday, tomorrow I start back with Zometa and my old friend Herceptin. Thanks for joining us.0 -
RE you are so brave and such an inspiration to all of us here.RE said:Add me to your list
Hello Iowa, in 97 I was stage 2 did 6 rounds chemo, 6 weeks rads and had a lumpectomy, fast forward 6 months later it returned in my sentinel node and chest wall. I then had 18 more rounds chemo and ten more weeks rads and was totally exhausted by the time that was all done with. I remained cancer free till 2007 when it showed up in the other breast a new cancer not a recurrent so I am still in remission from the stage 4 cancer some 13 years from when it all started. The 07 cancer required 4 chemos and I had a mastectomy this time. I am fine for the time being and enjoy life a lot, I have 3 grand kids who run me ragged and I love to go on weekend jaunts with my hubby so please know there is hope. I keep a watchful eye on myself and I sound the alarm whenever something seems off. Hope this has helped.
♡ RE ♡
Hugs, Leeza0 -
Pain between chemo and surgery? Increasing??Babysteps said:Pain between chemo and surgery
I have not had a bone scan yet. In april 2010 I was dx with inflammmatory breast cancer with mets to the mediastinum and nodes.I had 4 mos of Taxol and Avastin.I have to be off Avastin 6 weeks before the mast.The pain in my affected breast lymph node area has been increasing since the end of chemo.My surgeon said some tenderness is to be expected.
Yes, some amount of pain seems logical but increasing does not sound as good. your surgeon said to expect tenderness. I think that this sounds like something another medical professional should check out. Talk to your oncologist about it or any other medical staff. If you don't stand up for your body and its pains, perhaps no one else will. There are quite a few women on these boards who persisted in getting help when their main doctor tried to dismiss them. They persisted and found that they were right, that something else was wrong and it was a good thing that it was caught earlier than later. Keep speaking up, doctors are not infallible gods.
any other opinions for baby steps, ladies??0 -
Pain between chemo and surgery? Increasing??Babysteps said:Pain between chemo and surgery
I have not had a bone scan yet. In april 2010 I was dx with inflammmatory breast cancer with mets to the mediastinum and nodes.I had 4 mos of Taxol and Avastin.I have to be off Avastin 6 weeks before the mast.The pain in my affected breast lymph node area has been increasing since the end of chemo.My surgeon said some tenderness is to be expected.
any other opinions for baby steps, ladies??0 -
I am also on that rowboat....iowasignterp said:oh, it is never too late to join!!!!!!
Well if you tip the boat, you can help bail water with the rest of us, grin!!! Welcome aboard, it is so nice to see a few more passengers on this boat. It is a rather scary and adventurous ride but always better with friends!! Originally this ride looked a little lonely, but since I have started this thread, it feels so much better to know who some of the other experienced sailors are.
I have mets to the hip and vertebra and just set sail with xeloda yesterday, tomorrow I start back with Zometa and my old friend Herceptin. Thanks for joining us.
I agree with that "visual" of the cruise liner vs. our rowboat.....I was diagnosed 5/08. double mast in 8/08--29/29 positive--told I was Stage IIIc...re-diagnosed with bone mets in 6/09--now Stage IV.....they like to say "chronic".....in clear terms, its incurable and we'll be on treatment for the rest of our lives however long that may be.
That said, I'm lucky to only have minor SE's from Femara, Herceptin and Zometa....Fatigue and achiness. I find these forums invaluable as even having good friends, its the only real place where people "get it" as we all struggle along.
http://community.breastcancer.org/forum/8
Above is the address of a Stage IV forum on breastcancer.org where Stage IV ladies (and men) congregate.
http://www.bcmets.org
There is also the site listed above for those of us that have metastatic breast cancer (stage IV)
I participate in both of the sites above in addition to this one--I find each very helpful and supportive.
Teri0 -
One more thing....
In case you missed this article please check it out as I find it very hopeful and uplifting for those of us in this rowboat.
http://www.nytimes.com/2010/04/27/health/27case.html?_r=1
It's about a 17 year stage IV cancer survivor.....still going along.....
Teri0 -
New york times article is a nice upper!spoonchek said:One more thing....
In case you missed this article please check it out as I find it very hopeful and uplifting for those of us in this rowboat.
http://www.nytimes.com/2010/04/27/health/27case.html?_r=1
It's about a 17 year stage IV cancer survivor.....still going along.....
Teri
Welcome to the boat. Thanks for checking in. I did go to your link, that was a nice thing knowing it was 22 years for estrogen + stage 4 survivor. Wow. you just never know.0
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