Bone Mets Thread
Comments
-
my other comment would be once you have been diagnosed I don't think you should be able to drop off their radar as the patients would like too, I believe that usually it is there during the years that the patients aren't being followed , like we are. In my thought pattern we, being stage four already are watched closely for anything close to progression , but if a woman who had done chemo and had the surgeries and passed the 3 or five year mark and didn't have to be followed anymore, held more of a Risk of progressing faster from arriving at stage four,because by then they would have had the cancer spread quite far because they weren't being treated daily like we are. So all In all , I don't think I would find any comfort in not being followed closely (even though I hate it) because I would fear that something would be going on And it would go undetected without systemic therapies, in order to contain and slow progression, but with ladies that aren't being watched. They are technically done with treatment, but really the cancer is still there laying in wait. Till it feels like waking up again, more of a temporary remission vs cure which is the word they should just stop using, because it's just not true. ~M~
0 -
Absolutely, I was terrified of screening, but clearly the mets in my body had been spreading for years after I went off aromatase inhibitors and before they were found, and in fact had I gone much longer at all I would have needed a rod inserted in my femur for support. Why do the doctors wait until our spines collapse or legs crumble or we are dying with back pain before doing a follow-up screen? It's crazy...
0 -
I think that once you're diagnosed you should be followed period. I bet it's the expense of the insurance company. Maybe they are the standards they go by for constant treatments. I know the ibrance I take monthly is like $11k per month. Not to mention the other shot and blood work monthly. It is staggering. I believe that the insurance company doesn't want to pay for constant testing if they don't have an obvious reason. I am also terrified of screenings. But I believe knowing what I know now, I if given a voice with my onc, would insist on the six month screening just to be sure what is going on. It just seems like they are risking too much to just not follow someone who had cancer and very well could have it come back with a vengeance,because it's running rampant without any preventive measures after a certain amount of time. I don't think they really know what the heck is going on with cancer. It has a path of its own, And behind is nothing but destruction. Awful evil disease. I hope it just goes away from our lives!! All the money for research and no cure yet. I hope I see that in my life Time, so our daughters and their daughters won't have to go through what we did. Goodnight dear ladies. ~M~
0 -
Cuculi - Your post has signs of depression and has me deeply concerned. Please ask your onc for a referral to palliative care. We need our head in the game and many of these drugs mess with our mind. I am exhausted too and I hate the situation I am in too, and I get terribly sad ... sometimes from just reading this forum and what people are going through.
But I sense that you are losing your desire to fight. One of the practitioners I work with always starts our discussion with question that are clearly intended to diagnose depression. I find them very annoying and I have told her as much. she explained to me that she simply cannot help cancer patients if depression has taken over and it is so common ... she says you have to diagnose AND TREAT the depression first or there is no point if the patient is not in the fight ...
Hugs and prayers coming your way. Life is hard enough without monster chasing us but please expect to find an answer to what is weighing on you ... and go and find it.
>Z<
0 -
KD I don't know if I'm too late reading the thread but I'm so sorry to hear about your wife. I hate this disease so much heart ache and suffering. I met a young woman the other day who was 22 and diagnosed stage four , this for me was unbearable 22 so young. Now that your idiot president has stopped all research money for cancer a cure seems even more out of reach. Let us hope other countries find something. Until then we will continue to fight , we will raise each other up and share our experiences and joys.
Will hear the results from my POG test on Thursday don't think there is anything good there otherwise she would have not offered to tell me over the phone which I refused I want to look in her face. My oncologist doesn't have any umphf as far as I'm concerned anymore it's all about QOL when she comes with that I want to hit her lol. How did I get to this . I'm having basically no side effects with Taxol anymore I hope it doesn't mean it's not working who knows. Back at the gym and I'm getting fat again no more eating whatever I want anymore lol. Ct scan also Thursday would love a break .
Cuculi I get where your at totally, I have one son at home still and he is getting it first hand. My family is living in denial and all think I will beat this somehow. I pretend they are right when deep down I'm petrified and writing secret letters for everyone (very depressing). My husband works in Eugene Oregon so he is driving back and forth to Canada all the time . He is so worried about me but I'm glad for the breaks. Being a big bald lady I'm not feeling the amour like I used too I'm a different person now. I've found some strength in a cd my sister picked me up. It's a bit on the flaky side but I listen to it every night before I fall asleep it's from Louise Hay Cancer discovering your healing powerand it addresses our mind set and how to change it and use our minds to fight this disease. It's actually very fascinating and believe me I have a lot of issues from my past that could use some work. Anyway just a thought😊.
Sorry got a little long winded this go around.
0 -
Wendy - I am so glad you found the Louise Hay tape. I find that I am so raw from dealing with cancer that I am open to insights and discussions that I too would otherwise find flakey. My aunt is a healer and she sends me stuff like that ... and I get it. It really speaks to me when under other circumstances I could not sit still through one of these tapes. It's added another dimension to my life ... I say go for a deep deep dive into Louis Hay ... it will help.
Personally, I have a lot of reservations about the utility of POG. It's reasonable to look at this opportunity either way - a good thing or a bad thing. If the news is bad, assume it is the universe saving you from a waste of time. It the news is good ... go all in! Sink back into the old Louise Hay tape and you should realize that whatever happens with the POG is the best thing for you.
The CT scan, however, is where the rubber hits the road. I am expecting a good one but whatever it is, you'll deal.
My family is in full denial and I support it ... helps keep cancer out of my daily life and what good does worry do. But I can be a bit alone with this beast sometimes. Thank you all for being there.
I am a down myself because my side effects have been rough, fatigue, muscle pain, spaciness, headaches. It correlates with not exercising ... I have a little home renovation project going along with other fun family stuff like driving kids to camp and starting the garden, but it distracts me from my exercise routine which, I guess, saps energy. It's been a downward spiral to the point where I have about a half day of activity in me ... and then I just lie around researching the cure to cancer ... which contributes to being depressed. FWIW I can't find hope in 6 months more progression free survival with ambiguous or no overall survival benefit. The projects will be over soon, kids will be in camp, I'll get back to my routine and I'll be the Energizer Bunny of hope and optimism once again I am sure.
>Z<
0 -
Z~ ....just like we thank you for being here. We are in this shit soup together. Group hug!!! I know this disease is terrible and I hate it more than even the word hate can describe, as we all do. And yes they are being diagnosed way too early,, I was 45 when diagnosed and I have always thought that to Be very young. Onc says i Am one of the youngest that he treats. The other is in her twenties. Makes me sick. Once you have cancer, the ground underneath you goes away and we flail from test to test. Hoping for no progression, but in the back of our minds are knowing that at some point that word will cross our oncs lips. Who wants to sit there and go through that hell. It is just enough already. We are fu*king tired. Sick and tired. Well for one I can say I am tired of feeling sick and sick of being tired. This week is my off week from ibrance, so I feel a little funky. Iam off for blood work and my XGeva shot. Oh joy!! Yeah that's what I would like to do today sure why not. As I am sure some of you traipse off to chemo or your testing. My thoughts are with all of you. Always ~M~
0 -
good morning, I just read all the posts and I agree with all of you. I have to go to work now so I don't have time to address everyone individually but I hope to have time later. What I can say is that as you all say it sucks , it drains my energy, we have to use extra energy for all or most of activities. In addition, is the relationship with my husband as you said ...I just take a deep breath and sigh ...and keep with my daily routine which I think is the only way I can forget about cancer. And my family being in denial as you say is better for me because it keeps me away from those thoughts. Also because they have always seen me I saw strong independent teenager/ adult /woman.
I have read and Louise hay... the book is great ...I will look on Amazon for that CD you are talking about, I do believe those things help a lot.
Gotta run!
Xoxo
0 -
We got your back Cuculi --- let us know how you are doing. Great plan ... focus on your routine.
>Z<
0 -
I've had 3 infusions of Taxol so far and every time I walk in that chemo room and see new faces, I see young people in their twenties and thirties. I just can't accept that, it's totally depressing.
So next week is my week off chemo but it won't be a "holiday" sigh. Monday through Friday I will get rads to C1 and the clivus bone of the skull. Didn't even know we had such a bone in the skull let alone a met there, it's sort of a space near the cervical spine where intracranial nerves go through. I am told it will not help the swollen tongue or speech issues because one of the nerves is permanently damaged but it will prevent further neurologic problems. Chances of improving are very, very slim and I hope to be a rarity. A girl can hope! RO told me to expect severe headaches and nausea. So back to Decadron, oh joy, for 18 days including weaning. Good news is that ALT level went down by 60% since I started Taxol.
Aren't we just a bunch of brave resilient women? I think so but I would not be able to go through all this crap without the help of chemistry, anti-depressant and anti-anxiety drugs.
I hope this pic of my great-nephew will put a smile on your face. He's 8 months old.
0 -
Linda~ it sure did. The resason we fight, family is everything, and good friends also count as family in my book. I have friends treat me better than my own father and sister and one brother!!! It's a joke. He is precious!! Adorable!!! Hugs ~M~ Thank you for the smile. Precious angel he is !
0 -
LindaE, I understand how you feel when you see all the young people having treatment. I get depressed from just seeing the number of people in the chemo room - people of all ages. It is a clear reminder of the fact that cancer can hit anyone and that it touches everyone. There is still so much to learn about the diseases that we lump into the cancer label. Your great nephew is 8 months old already? I can't believe it. He is a beautiful child. Raphael, right? I hope you have some relief from all the craziness soon. You certainly deserve it. The news about your ALT level is wonderful. I am picturing your mets dissolving a bit each day. You are resilient, indeed. None of us would be here without the help of chemistry. I will be with you in spirit as you have your treatments. You remain in my prayers.
Hugs to all. I will try to catch up on this thread soon.
Lynne
0 -
Linda,
Darling boy!
When I see children and young adults at the cancer center I make myself believe they are curable and will be just fune.
0 -
Linda you are so lucky I'm getting that grandma thing going. I want to hug all babies I see and Raphael is so cute squish him for me. I so want to be around for my grandchildren thinking that another woman may have that joy breaks my heart.
0 -
Oh my gosh, what is better than baby toes? He is very adorable and did make me smile. Love his hair and rosy cheeks.
My heart breaks too on that thought Wendy. I am very possessive and jealous about handing my family off to someone else. I try and think like a good Christian person but it really kills me inside. You are a big, bald GORGEOUS girl. I am not feeling the amore as much either but one thing I have learned from this sight is that love can be very blind. I am going to try the CD too.
cuculi, I think Z hit the nail on the head about depression. I think we all suffer from some degree of it but yours may be getting into that downward spiral which is so easy to fall into. Palliative care and possibly getting some chemical help may help tremendously. I plan on looking into that soon. We do have to keep our head in the game!
Z, It is very lonely being this person. There is such a stigma and lack of understanding with this disease that people just don't realize how difficult it is to walk on our path every single day with hardly ever a respite. I hope you find some time soon to get back on the road running, into some nature and whatever else brings you some satisfaction and hopefully joy! Regardless we are all here for each other.
Linda, sounds like the next two weeks are going to pretty much bite. My heart aches for you. I hope it all goes better than you expect and the Decaton helps immensely. Take very gentle good care of yourself. You are beyond resilient! One tough chick.
OK ladies, let's all rally and find the silver lining tomorrow even if it's just for a day....
0 -
Hi everyone! Haven't been posting much lately, but thought I'd stop by and say hi and let you all know that I'm still here
I had to go have a doppler today on my right arm to make sure the swelling isn't from a blood clot. It's not. It's lymphedema...who knew I'd ever be glad its only lymphedema? Have been keeping in touch with Micmel via phone and texts. She's got some great information on helping with lymphedema! Kudos to her So tomorrow is my bone scan, and next tuesday is my ct. scan. Sigh.....it's one thing or it's another!
Am driving to Wyoming Friday on my own. Nine hours one way, my daughter is competing in the Mrs. Wyoming pageant. She did pageants as a younger woman, but decided if she was ever goign to do another one, she better do it before the kids got to the point that she couldn't. This will be the very last, she said. So going to Cheyenne, will drive back home on Sunday. It will be a fast trip and probably exhauste me, but I can't turn down the opportunity to go see her on stage for what might be the last time.
You all take care and have a good weekend.
0 -
Shit soup indeed! Thank goodness for chemistry.
Your wordsof encouragement are the best medicine of all. Hugs to each of you brave women in the days ahead.
0 -
I can relate to everything and definitely agree. I do feel like it's hard for everyone to understand the fear associated with this disease. I'm grateful that I am in remission now after 6 months of weekly chemo for bone and lymph node metatisis. I'm on tamoxifen now. I still have soreness in both my hips where the cancer was and I worry about the cancer flaring up again since it was in both my hips. My left hip broke due to the cancer and I had to have a nail and rod placed in my left leg. I'm still trying to learn to live with this disease, but I have heard the first year is the hardest. I'm trying to stay positive but it's tough
0 -
I agree with you all! Got yesterday my natural "chemistry" and last night slept well. Hope this one goes well too
Have a great night.
Xox
0 -
Linda E. Your great nephews picture made me smile! what a cutie!!!! I am hoping my dd and her hubby give me a grandchild soon!!!! Fingers crossed. I need a baby to love and to give me purpose. We had Shavuot dinner at their apt last night which is one of my highlights- seeing how happy they are.
Wendy. I used to think I was good looking and my dh made me feel sexy. How can I feel that way now with little hair, scars all over and no energy. BC sucks. I feel badly for my DH. He lost that part of me to this disease.
Going to Florida tonight to see my folks. My dad has no idea about me. My step mom knows all. It's so hard hiding this part of my life from him but he's 95 and no reason to worry him.
I come back next week to treatment and a meeting with my MO. I really don't think the gemzar is working. Just tiring me and causing me nausea. We'll see what she says!
Have a good weekend everyone
Babs
0 -
Gracie~. I am in awe of your taking that trip. Good for you miss!! I will get there someday, I am such a homebody, and I haven't been driving too far because I just hate it. When I want to sleep I want to sleep! So thankful your lymphedema was all you are dealing with. We don't need no stinking blood clot!!!!! Big hugs ~M~ Be safe on that drive. Stop and rest when you need to! Please be careful. That's a long drive you're amazing!!
Babs~ I know how you feel about your sexuality, it's depressing And basically non existent once this happens to our bodies. It just isn't there anymore. He swears it is a stronger bond, and in many ways he is so right. He still treats me the same, but I know that the old phrase taking a roll in the hay has changed and I hate it!! He's so handsome and I used to be beautiful, but now I have to find a new meaning for that word when associated to myself. I just don't feel that way anymore. The way I have felt is broken, I wish it wasn't this way for us. It's almost like we've been gutted from ourselves and are outside looking in.
Hugs strong ladies ~M~
0 -
good morning! I slept well
hope you all did. I feel the same regarding my body and the relationship with my husband. It is so hard to accept this new and that before 40 I have no harmony with my body. I used to have a good relationship , if I can say that, with my body and my sexuality. But now my body is something that I don't feel comfortable with: I would like to take my body out , leave it on the table and look for a new one. It may sound strange but that is exactly how I feel. So I understand you micmel, babs and the rest of you ... I feel pity , sad for my husband. He is so frustrated about everything. He has his own restaurant so his job is very demanding. In addition his mom and dad both died of cancer. And now me. And my son feels it. Totally sucks. But well, just keep going. Long time ago, when I was in school, a friend gave me a magnet with the following quote: if you are going through hell, keep going. Hahaha
One day at a time. And observe how my body, mind and spirit deals with all this. Is just feel my life is not real. As if i were an actress. Weird...
Gotta run to work I have a long day today.
Cyber hugs
0 -
Deanna - how are you? I read on another thread that you were dehydrated and not feeling well. Worried about you. Has anyone heard from Deanna?
0 -
LindaE, I had seen that post from Deanna, too. Yesterday I sent her a PM because I was worried since we hadn't heard from her for a while. She responded that she was finally beginning to feel better. I am sure we will hear from her when she recovers. How are you feeling?
Hugs from, Lynne
0 -
Linda,
I did a pm to Deanna yesterday. She's getting better physically, but still taking it easy. This infection really hit her hard. She's waiting some test results. Think she'll check in when she gets to feeling better. Prayers appreciated.
0 -
Thank you Lynn and Kaption. Good to hear she's on the mend.
Lynn - I'm feeling ok, Taxol seems easier as time goes on. I had anticipated much worse, so I'm pleasantly surprised. My ALT liver level is down by 60% since I started Taxol, that should be good. Hopefully TMs will follow the same trend.
0 -
Hello, all-
I am a Stage IV newbie and have a question about the appropriate scans to follow up on my 1st 3 months of letrozole/Ibrance. My doctor ordered a Pet scan for next month to see if the treatment is working, but the insurance company denied it, saying other diagnostic tests come first (CT scan?). Where do I find the appropriate diagnostic tests and their timing for my particular drug regimen?
0 -
Pole~. Welcome, but very sorry that you have to be here because of the dreaded cancer. My oncologist didn't scan me until month six. He did take blood work every month and XGeva shot for bone strength, I believe that while you can see some results at three months, usually the norm to see some good results seems to be around the Six month medium. My scan was two weeksago, and I was considered very stable. I will take it !! Hope you have great success! ~M~ usually they begin with the ct scan. And work their way from there. A lot of insurance companies do have lifetime limits on petscans. Medicare I believe is one of them. May you get awesome results!
0 -
welcome Pole you have found a great resource for friendships , kindness and understanding as well as a lot of kick ass information on making future choices in your care. It's scary at first but that dissipates somewhat as we accept the new normal.
Ct scan today yikes been having a tiny bit of pain in the liver area so yeah I'm sweating it. Dragging my sister with me this go around. I'm sick of facing bad news alone. No more toughy Wendy....
Linda I'm so happy the Taxol is working for you side effects are really minimal aren't they. Are you having any nose bleeding? I have a lot of blood coming out of my nose when I blow it been that way since the first infusion?
Babs having seen your daughters wedding photos I have to say you are still very beautiful. We are always so hard on ourselves I wonder if the day will come that I give myself a break...
0 -
On the "beauty" front....
Gees....I can remember how hard I was on myself in my 20s and 30s - always jogging, working out, counting calories, and complaining about my thighs, or a stray zit, stretch mark, or whatever. I never considered myself beautiful back then, just "slightly above average" in that I didn't have to go around with the proverbial PAPER BAG over my head. Now, I'd give ANYTHING to look like that again - zits and all!
Sadly, those days are long gone, never to return. I was just thinking this morning when I woke up after a mere 5 hrs sleep (and that's a GOOD night for me, ha ha) that our bodies are programmed to heal - - when we get a cold or the flu, our body's immune system knocks it out; when we cut ourselves, we form a scab and then a scar and off we go. But that's not the way it is with cancer.
Death always wins in the end. IT SUCKS!
The only way for me to get thru this is to think of it as a bodily, "physical" death only. Our spirits will soar with all the great cancer warrior women who flew on before us: Stephanie, Rosevalley, SattiPearl, KD, Vickie, and SO MANY OTHERS.
Until then, we have to trudge on and try to be beacons of hope and light to all the other sisters fighting alongside us.
Sheesh - - better stop writing or I'll start sobbing.
0
