Bone Mets Thread
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Good morning! After a while, quite a while, I check in again but always in my prayers.
Happy birthday for all the birthday girls. I turned 40 on December and did not celebrate , I just didn't feel like it ...maybe someday I will celebrate again as I did before.
We all try to adequate/adapt our lives to what is happening to us however it sucks, in particular when it has affected the relationship with other people. I have changed my interests and priorities (kind of obvious) so now I feel I have walked far away from certain people in particular my husband. The good thing is that I feel more in peace with myself because I am doing the things I want on my own rhythm.
however I have been hanging on quite well since my diagnosis in 2015. But they are always symptoms and I get them they go away and another one appears!
since August last year I'm limping on my right leg but now I am doing quite well however I still cannot walk very fast without limping. On my left side has cannot feel that cold or hot water from the waist down. Yesterday got my abdomen, pelivis and torax scans. The first two ok (meaning no progression) but torax shows pleural spilling / effusion of 20%. Makes me so frustrated because I have done so many things regarding body mind and spirit that it makes me wonder what am I my doing wrong ????? And I still have to pick up the brain MRI which last time show a "point" on the skull. I feel my energy so drained. Only my 6 year old boy keeps me going. As one of you said: why ? Which is the reason for me to keep going? My answer should be because I want to.... but it's not it's only for my boy .
I wish you all to enjoy your weekend, I am going to find a natural way to reduce or eliminate this pleural thing
Xoxo
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Yes Wendy, we got this! Oh how encouraging you don't have SEs anymore.
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Cuculi-
One message for you- YOU'RE NOT DOING ANYTHING WRONG. You cannot blame yourself as this disease does its thing.
Do hold on to those who help you through this and things that make you happy.
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Cuc~I can hear you're having a hard time. I know we'll have our moments. I realize I have changed also. I am no longer the person I was before. I don't tolerate idiotic behavior, or extra un needed drama. No thank you! I am less patient. I am more scared. My kids aren't 6. But I have three and they are 21,20,16. I want to see my grandchildren, I want to lovemy DH. I want to see them marry and be happy, i will accept nothing less. I love my life with my family and i will have to be drug away kicking and screaming and then some, before i would ever give up wanting to be with them. So I realize, it is for them and for me. For everyday I am given. For every minute I hear them laugh. I will include you in my prayers. Hang in there. Hugs ~M~
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kaption and micmel, thanks! I am having a hard time. Ups and downs. I teach in university amd makes me have to focus which is good (although some days really hard). But I do have to focus on the good things.
And yes, there are lots of good things but having started this at 36 and feeling emotionally exhausted, I don't know how long I will want keep with this. I simply don't think and just live day by day. Actually this is the fun part, I have become a little careless (I used to be so organized and so "correct" with everyone). So yes, we have to see the positive things. Although I miss lots of the old me.
I visited my homeopath today and I am sure I will start feeling better soon.
Have a great night and Sunday!
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Gracie - it sounds like things are serious and you do need to see someone. you also need a pump. but don't forget basic care of your lymphatic system ... compression sleeve, exercise and dry brushing.
with compression sleeves, the ones made for sports do exactly the same thing the ones sold for medical purposes do, at a fraction of the cost. the trick is to find the right size. some pressure but not uncomfortable ... you need to wear it all the time.
dry brushing is hugely helpful but it's good to watch videos ... you need to move the lymph towards the areas where it drains ...
swimming and yoga are particularly good.
i personally find every little setback sends my spirits diving. keep your head in the game. you are worth it. you need to deal with this. things get better. this is just another cancer hassle ... we all deal with it.
>Z<
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Photogirl. Just love the giraffe photo!
Lita, I sure hope you find something to deal with that chronic back pain. That alone has to drain you.
Gracie, I am so sorry you have to think about your son leaving now. What a bereft feeling....As if we don't feel alone enough. I hope he reconsiders.
Happy belated micmil! i know everyone if different in their emotional states and amount of pain and suffering they endure. But like you, at this point I will do whatever it takes to spend more time with my family. I just cannot fathom my DH alone or kids without a mother.
Wendy, I'm happy to hear you are feeling better and thinking about getting in the fitness and fresh air.
Cuculi, I agree, I miss the old me so much. However I too have gained a few new positive traits the I ma kind of enjoying including not putting up with much BS from others. I am more direct. I hope the homeopath helps and something I should look into very soon.
Caption is so right, you did NOTHING wrong. This horrid beasts strikes every facet of life.
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Micmel...I absolutely HATE wrapping!!! It makes me hurt worse. But if it's not down by the first of the week I'll let you know, I may need someone to walk me through it because I have forgotten and it's been a while.
Z, you can get a wrap at a sports store? I really did not know that.
Artist, I'm just at the point where I can't think about it any more. If they do move them I'll face it but right now I just do not have the enotional currency to deal with it...avoiding it
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Cuculi, the others are right. You are doing nothing wrong; none of us are. It is just an angry disease that does not discern who we are. A friend of mine and I were dxd the same week with different types of cancer, and we have led good, clean, healthy lives. It is not about what we deserve or what we do. It just happens. My symptoms come and go and most of the time I have no idea why. You are right that we fight on for the ones we love. My children are grown: 31, 36, and 40. I have 3 beautiful grandchildren ages 5 months, 2 years, and 3 years. I want to watch them grow up and contribute to their lives and it saddens me that I will have to fight to enjoy my retirement with my husband. But I push on to give them hope for their future and to tell them I love them. I will pray for you and that you will many more years to enjoy your son.
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Lovely, inspirational words, IntoLight.
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Gracie~ I hate the wrapping too, but have come to realize, that once In a while it flares up and that is the only thing that really brings it down, the pain is quite annoying and it gets to you after a while. If you wrap it at the first feeling of swelling, then you can nip it in the bud, before it gets to the point to where you need someone to help. I had every node available taken out of my left arm and it was bad!!! And very chronic. Like Z mentioned, having something on it everyday helps me tremendously, I found the thing that works the best and is most comfortable for me is a little tube sleeve, that my therapist gave me last year for free. It works better than the $60 sleeve, I find that the more I use it, the less I need to wrap it. The fluid needs to be moved away from where it lays in your arm, without that movement it lays still without natural movement to allow the fluid to find its new path. I take lotion in my one hand. Not a lot at all. Just enough for a little glide action, and nothing perfumed or scented, and I gently flow towards my heart when I massage my mastectomy area and away from my hand and upwards, when it's my arm. Not too hard and not too soft just to where you can feel instant relief. Let me know if you need the wrapping catch up. You will instantly remember. But I hope you called that number for the pump!! I know how feeling like this with your arm can additional drive you mad. I am also like Z and really don't want to deal with other things that cause me stress. I'm like NO! Not dealing. I don't want you to have anything else to deal with!!! We have enough!! Hugs!! ~M~
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Happy summer to all
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It's difficult to keep up with this tread sometimes, sorry.
Micmel-Happy belated birthday, I hope you did something enjoyable.
Wendy-I'm happy to hear the taxol is treating you better. I have one suggestion, I would put on a few lbs, if you can before taxol affects your taste buds, I lost about 15lbs because almost everything was gross at times.
Gracie/Z-Lympadema freaks me out, I'm sorry to hear about the trouble it causes and am taking notes on the recommendation you all have.
My surgery is scheduled for 6/27 pending CT scans on Tuesday, if no progression is found.
Lita-This pic is 2/3 of our family, just the brindle remains, hope their little butts bring a smile.
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Micmel first thing this morning I read your post and it brought me to tears my hormones must be affected with Taxol lol. Very true I'll be right beside you kicking and screaming...
Z your right a lot of the woman on the dragon boat team have those sleeves keeps the arms warm and compression on. Think of that biking you will be doing in Whistler we are having super summer weather trails will be dry😊.
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Cuculi that's the best I could do. Dani was just starting life, new baby, in her 20's, never smoked/drink ate ok, thin, no family history, and this s@#&t happens, bad things happening to good people. I cannot wrap my head around it, none of us can. you doing good in limiting what/who comes into your life, that's what she does. It's messed up, messed up.
Lita what's with kypho?
Lilimae is the surgery for the liver? very cute family!
Finally Friday late pm. Onco sends an email, that Enzalutamide is denied and it has to go through appeal. It means doc was suppose to call and do her thing.After Dani called all day back and forth. Onco's office said they left a message with Insurance, when Insurance called back they said they could not get hold of doc.Whatever. The thing is she's off treatment comes the 31st 3 freaking weeks. I am so nervous, cannot even begin to explain.
I could send a whole expletive email, it was in my head a whole night.
Well, short of it, i am thinking if i should send an email, telling her of our apprehension, And something to the effect that we really were hoping the office would have taken care of it. Yes, Insurance could be difficult, but the way we see it, onco's office just leaving a message and making a note to follow up, i think that's the real problem. they call, do something else for 3 hours, then when we call them they say oh yeah, we'll try again, and they allowed this to get to Friday pm, when they close!! Friday is almost not a day there, i learned they only know of 4 days(making fun, but it's like that), and with this long weekend, don't they have a responsibility in making sure their ppl have a supposedly life saving treatment. I just know that her liver mets expanded, and there is progression, so how could they in good faith go to their boats....I am really very mad. And very anxious!!!
I think i'll write something, not harsh, but let Onci have it an email, they don't like that, because i think their email get checked by big brother from time to time, and it won't look good for her.
If anyone wants to draft something, by all means. I just pray to God this thing does not go out of whack.
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momallthetime, the surgery I refer to is a lumpectomy and axillary lymph node dissection. No liver mets for me, at least not yet. I'm sorry about the onc/ins. problems, I wish they had better appreciation of what we all go through and the things we need from them.
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lilimae so sorry, i got mixed up. Best of luck on your surgery. No, they don't understand they think thy are doing their jobs They have to make sure there is a delivery of care. I think economically it's stupid, you end up having 3 ppl doing the same job, that's what it is over there, and having this on their head for days, instead of doing right to begin with. Onco/NP and secr and a person that does the approvals, they are all involved, and no one takes it to the end. i can't yell at them, and meanwhile Dani is not getting treratment,that's all i know.
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Illimae, your doggies are adorable. Brought a smile to my face.
MOM, I'm thinking of Kyphoplasty in the future. I have five compression fractures in my spine...thank you, Mr. Cancer. Rads can only do so much for the pain, but some of my pain is because of compression and degenerative arthritis.
Keeping Dani in prayer. Insurance administrators s÷>k. They are not Dr's. They make our lives a living heck. All the phone calls, all the work we have to do just to get a darn Rx. It's maddening.
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Mom-your anxiety, frustration and anger are tangible and totally justified. My heart is aching for you and Dani. I feel as though we all need an invisible clone to be in the MO's office overseeing the process. I was a lab technologist for 30 years, and we always tried to treat lab results as though they were our grandmothers' by getting them to the right set of eyes ASAP, especially if abnormal. Many times there were barriers that we had no control over. The more people involved, the longer things take and mistakes are compounded.
Delays like this are not acceptable in situations when people are in a state of great anxiety or in urgent need of treatment. There must be someone in that flipping office who gets this and will go the extra mile. I find standing at the reception desk in a flood of tears to be very effective. This was me years back trying to coordinate treatment for my ill father.
Good luck, may the force be with....Sending love and hugs, MJH
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Lita hope you get this taken care soon enough. Bens_mama on the other thread, the liver mets had this procedure, if you wanna tap her. Thanks for the prayers.
MJHJAN1014 exactly, the anxiety and stress is the worse, and it's so unnecessary. Thinking about the whole weekend. I hope it was on their heads too. Yeah, I just hate that D has to deal with it. I try so hard to help her sail through this misery, and then these people come and mess things up like this. I know you guys are thinking of us, i really didn't wanna sound like a whiner, but with so much uncertainty about treatments and such, then this nonsense, i am kinda lost.
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Momall. Take a few deep breaths. It is so very frustrating that insurance gets in the way sometimes from us getting our treatment in a timely fashion! I had that problem when I went on ibrance. Hopefully tomorrow the MOs office will get on it and seriously!
Had a really nice weekend but felt nauseous most of it. Saw Hello Dolly with Bette Midler which was amazing. Then had dinner with my dd and her husband. Spent yesterday with dear friends. We walked sooooo much and then went for dinner. Today my DH s cousins from Atlanta came so we went to Dylan's candy store and then for lunch. Tonight we had dinner with my DD and her hubby again. We lovebeing with them. They're sooo good together. A weekend like this is what it's all about!
Babs
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Thanks Babs, this held her back from trying another trial, so it's really upsetting.
Sorry for the nausea, So glad you are making the most of the time while your daughter is here, she obviously has her priorities right, good for you.Good friends, good food, what else could someone ask for. Enjoy!!
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Mom, the callousness of both insurance and medical offices if infuriating. I think they need to have a symposium on our point of view dealing with this disease.
babs, so glad you had such a nice weekend. Sounds like a whirlwind. I would love, love, love to see Hello Dolly with Bette. I love theater and classic movies. What a great combo! Hope the nausea eases up for you. Is that from the gemzar or just an off weekend? Feel better.
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Moma, It may be that Enzalutamide ( Xtandi) is used for advanced prostate cancer and that could be part of the denial. I have been through 2 appeals so please pm me if you'd like some tips. I hope it all gets ironed out, that MO makes a case request and that Dani will be able to receive this drug. Sorry both of you are going through this.
Babs, love to hear you enjoying your family. I'm going to NY this summer so I may have to get tickets!
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Just read that Olivia Newton- John has announced she has mets in her sacrum. Her original bc was in 1992. Wow!
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Linda. Definitely try to see Bette in the show. So amazing!!!!!
Artist. The nausea is from the Gemzar. Plus I'm burping a lot! Ugh!!!!
Momall. Any updates on the medication approval?
Kaption. I don't think anyone can ever be secure once they've had BC! My younger friend was just dx with bone mets after being " cancer free" for 5 1/2 years. Her original sx was Stsge 1A. I do get upset when I hear of ounger women dealing with this. It's just not fair!!!!
Babs
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I believe once it is there it lays dormant until that same stimulus gets it moving an active again. No one is ever cured in my opinion. Maybe one or two in miracles. But overall most women have reoccurrences. It has to be our food with added hormones. Why else would we have a surplus. It's just annoying. I just got done jogging 30 mins and I'm thinking. This sucks out loud. I had so many plans and then i sat down to watch days of our lives. And the beginning it's the sand in the hourglass and it says "like sands through the hour glass, so are the days of our lives..." that hit me for the first time hard. I have watched that show thousands of times everyday for years. And wham. I finally actually "heard" the beginning as if it was the first time I had actually heard it for real. I was like wow. That is some heavy shit.
Mom thinking of you and Dani! Insurance sucks also.
Gracie ~ hope that arm is better. Let me know!
Babs~ so great you got to see that show!! I saw Cats and Mama Mia. Awesome awesome!
I was also sad to hear of Olivia newton john,I wish her well but hope this will bring more needed attention to MBC and the actual things us patients deal with. Up close and real life. I wonder if she will receive ibrance as well. Bless us all. No matter what cancer will never be far from our minds. Hugs ladies. ~M~
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Off topic but I found out through facebook this morning that an aquaintance passed away yesterday from a stroke, he was 42. Here I am dxd w/mbc at 41. Who would have thought we were middle-aged in our early twenties?!
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I'd like to second ~M~ on the question of what is the lifetime chance of breast cancer recurrence- why is it hard to get this number? When I was first diagnosed, I tried to get an answer to the question from the literature. The numbers we hear are usually about chance of recurrence within five years, whereas I wanted to know what was the chance of recurrence over my lifetime. Of course data like this is always out of date, owing to better treatments that come along, and although treatments delay rather than stop progression, that can be good enough if the delay is sufficiently long. Some who get breast cancer the first time are already sufficiently elderly that they die of something else.
Nevertheless, for ER-positive breast cancers, the graphs looked worse than I had expected. As I recall, it looked like at least half of breast cancers eventually come back, when monitored over longers periods of time, and the graphs never really reached a plateau, it was just a gradual downwards slide...
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I had just written something and I dont know what I did!!!! Ahhhh!!!
Anyways, Ilimae...have been thinking a lot about that... I feel sooo old...
Artist, intothelight and mom:
artist: thanks for your words!
Intothelight: administrative procedures sucks! What would happen if it were its daughter? brother?
MOm: And I love the quotation!!!
Besides dealing with the pleural spilling... now the brain: MRI shows that whatever was in the skull on NOv has grown,.. a little but has... so microsurgery or gamma knife is an alternative. Not in my country though... I just feel drained again... like superman with kryptonite
Now I have to go home, see my boy, who totally feels that I am sad and suffering inside. And at night my husband... that sucks... I just have nothing left with him. There is nothing we really really like to do together. He loves TV I dont and he totally likes to watch his own things. And falls asleep coz he wakes up early aroung 5am and aroung 9:30pm back home. Ahhhh... When he arrives earlier I just prefer him not to... So yes cancer sucks and I do try to do my best and enjoy, as much as I can, the good things... but the real thing is that I am tired of trying to enjoy, trying no think, etc etc.
xoxo
good night
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