Bone Mets Thread
Comments
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Wow chrissy, you are my Hero!!!! Thanks so much HLb xoxoxo
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Macy -
Glad to hear you are doing well so far on Taxol. I found Taxol to be pretty tolerable when I had it 12 yrs. ago. Also, it didn't take my eyebrows and eyelashes like my first chemo did. So that was a good thing.
Hugs -
LL
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My mom has finally got an appt. for the bone biopsy for this Thursday! They're going to biopsy the right clavicle where one of the lesions is. I'm glad that we'll finally have some definite answers after waiting so long but terrified of having our worst fear confirmed. Part of me hopes they won't give us the results until after Christmas so she...okay, we...can enjoy Christmas in case it's bad news. I'd welcome good news anytime, of course! Reading about lytic lesions doesn't make the likelyhood of good news seem very possible though.
Thank you again to all who have chimed in and to those who have messaged checking in.
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Did it take your hair out Lizlemon? And if so how long before it started falling out. I have been wearing mine in braids and I am scared to take them down. I know I will probably lose all of it and I'm not concerned about it to much just worried about the initial shock. Also I don't seem to have any appetite at all. I'm am going to force myself to eat something.
hugs to you to0 -
Hi, Macy!
Well, I was on Adriamycin/Cytoxan cocktail first, which really did a number on my hair, eyelashes and eyebrows. With Taxol, I had kind of peach fuzz on my head (which was way more than I had prior), and had the eyelashes and brows.
The Taxol felt much better to me than the AC combo. I wasn't nearly as nauseous, and it was encouraging to see peach fuzz. I did get flushed from it - neck and face, and when I would get the infusion, I would also get this restless leg syndrome going on. I think they gave me steroids as pre meds, which could be why I actually got flushed. I lost my hair on the AC starting on day 16, with day one being the day of chemo. My hair started to 'hurt' first...kind of like when you haven't washed it in a while, or you're sick, and your hair hurts...
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I had the AC first and then the taxol also. Lost my hair with AC around the same time, I think it was day 17, then with the taxol I lost the brows and lashes and every single hair on my body. I had no nostril hair or anything. The taxol was a breeze compared to ac and I didn't need nausea meds at all. I didn't have much appetite for a few days, then I would get really hungry but nothing tasted right. It was like half the flavor was gone from everything. I would eat dill hamburger slices for the strong taste. And my legs hurt with the taxol too. I found that 2 ultrams would work really well. I also got restless legs during infusion due to the steroids. Ativan would get rid of it but it usually took 3 mg then I would fall asleep or act dopey and spill things on myself. That was back in 04 when I had stage 2. I think the dose is stronger when they do it that way. Not sure.
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RangerMom - my journey so far has not been too bad except for the pain, which is finally under control with a Fentanyl 50 mcg/48 hrs. Normally it is prescribed for 72 hrs, but that was not enough for me. I have been on Femara since the beginning and had minimal SE with the brand name the when the generics came out my ins. Made me switch to a generic, then the fun began. On my 4th brand now and still have severe hot flashes, nausea, loss of appetite, neuropathy, insomnia and extremely tired all the time. Finally getting to go back to name brand tomorrow, I hope. I also get an infusion of Aredia every 4 weeks to help control bone loss caused by Femara and mets.
To answer your question, I have a strong support group with my DH, church family and friends that pray continually for me and are always available to help with whatever I need. Then there is all the support I get from BCO friends like Chrissy. I take one thing at a time and live life to the fullest that the day will allow. I have also accepted the fact that I have a chronic disease and will always have cancer so I live with some limitations, but don't let them stop me from enjoying the things I love. My attitude is a matter of choice, so I decide everyday to be an nice to others and myself as I can and be grateful and happy to have that day to enjoy, even if it is a bad health day.
This may not work for everyone, but it works for me.
Joy and Blessings, AJ0 -
macyhen111-
My hair started falling out around the 3rd infusion. Not the clumps like the AC ladies but when I'd run my hand through my hair I would get a lot of strands. So it just kept thinning and eventually made me look pretty bad with this sick hair. That's when my DH took an electric razor to it. Actually looked better with no hair than the straggly witch-like hair.0 -
How do you ladies deal with the depression? Sometimes I am in a fight this cancer shit mode.,but lately I have been so depressed. I have a wonderful dh and family support. I think I am more scared of what's gonna happen to me.I'm just in a foul funk and I don't know how to get out of it. Thanks for letting me ramble.
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Anti-depressants. Lexapro for me.
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I'm on Lexapro too. Though, I have had clinical depression for years even before any of this mess. And anxiety before any of this. I think all things considered I'm holding on to my sh*t pretty well. But I am starting to feel a dark cloud coming over me in spite of it. But trust me, if I weren't taking it at all, I'd be weeping all day, and on and on, so I know that for me it does make a world of difference.
My darkness feels like profound world-weariness, if I had to describe it. I feel defeated. The extra money going out to pay our portion for all the scans I just had and my medicine has kind of screwed us, and I have a very stressful job, which I obviously need, so I have to keep up this huge front of being perky, fine, better than fine at work under some truly impossible conditions totally unrelated to my illness. Then there are the well meaning, but oh so misinformed friends...educating them, comforting them. The strain of it, it just gets to be too much. And then there's the guilt! I should be so happy I can just walk and talk and that I'm able to work. Who am I to be such a sad sack, right? Ugh.
Macy, I also worry about what will happen. Right now, I'm really focused on how my January scan will go. Mainly because I don't want to have to quit Xeloda, because it's so 'easy' to take compared to other chemos I had in the past. I think if I had to lose my hair right now on top of everything else, well, that would be the straw. I know it sounds stupid, but at least now I can 'hide' this from the world. I don't "look" sick. Having to deal with a wig again, it's almost an overwhelming thought for me.
I think we should start a depression/anxiety/issues thread for Stage IV only. I've visted the one that exists, and I don't want to post there, because a) I don't want to scare the hell out of anyone, and b) early stage issues are so different than ours.
I will end by saying: THIS SUCKS.
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Lizlemon I so agree with you that we need somewhere to discuss our depressions, fears, anxieties etc. I hate to dump my depression issues on ky dh and family. They try to understand but they really don't get it. Besides they are dealing with their own issues while helping my through this awful illness. I was on 20 Mg Paxil, but my Pcp put me on prozac I've been on it for 2 weeks, he said it takes about a month for it to start working. I am also on clonopin for anxiety.
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Hey, Macy - I take Klonopin too. I think it does a pretty decent job. Prozac can definitely take a month to kick in, so don't be discouraged. I did really well on Prozac for years.
I understand what you mean about not wanting to "dump" on your dh and family. I have one really good friend who honestly has such a great capacity for understanding. I try to tell myself to just shut up around her about it, but it's so refreshing to talk to her, and just be myself. But still - she shouldn't have to deal with my stuff. I feel guilty about it. And - to your point, she's already dealing with her own fears, etc. My dh is so wonderful. But he won't say a word about anything he may be afraid of - and clearly he must be. He just got a promotion today that he's been working on for the last 2 months. He only told me of his efforts today. And why? He didn't want to stress me out further. So, instead he's walking around here keeping this secret. Going through the work roller coaster alone.
I think I'm going to write the mods and ask if they would start a Stage IV Depression/Anxiety Topic thing, then people can start their own threads underneath it (vs. trying to jam everything under one thread that goes on forever, and isn't well organized.)
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Thanks lizlemon for taking the time to listen, it really has helped me get over this episode of depression. Just having someone and somewhere to voice my feelings is such a blessing to me. Hugs to you and your family. Obtw your dh sounds wonderful like mine
. I really hope we can get a stage IV topic thread.0 -
Macyhen and Lizlemon,
With what we're going through, people can be kind and listen and help as much as they can. But no one can truly understand unless they are also facing down this monster as we are. Or, if someone has been hit with a similarly devastating chronic prognosis. Antidepressants do help to regulate the brain chemistry that's been shot out of whack thanks to the stressors.
I don't think folks realize that by treating us as "other" with all of the best intentions, we need to be included and continue to go through life as it is. That's the normalcy we need, I think. It helps us to help others. Six months ago I would have labeled that a sappy thought. Now I know it's true.
My friend Mike had a stroke two years ago in October. He was 48 at the time and it came out of nowhere and a cause was never found. He still struggles with aphasia and weakness on his right side. One night I just held Mike's hand and started to cry and told him I was scared. He got it. Just having the support of someone who is fighting one day at a time meant the world.
Not everyone has the opportunity to "get it out." I rant and rave in my blog and that commitment to writing and expressing myself has truly saved my psychological life. We do need people to talk to in some manner so that we can affirm our fears, register our doubts, share our hopes, and show empathy for others (and ourselves).
I can't believe this period of pain and uncertainty that I've been going through is into its third month (though now the uncertainty part is pretty much answered). It's hard. We have to share our feelings, doubts, and fear uncensored! I am always willing to listen--as are we all. Were it not for writing and the support I get from all of you, the Sisters 2012 discussion board, and the many advocates, patients, and physicians I have met through blogging, I think I'd be a total mess.
Good idea about asking the mods about the depression forum!
Scorchy
(Sorry if I'm rambling a bit--it's the drugs talkin'!)
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Scorchy -
So well said - every point. I'm so sorry your friend is still suffering the effects of the stroke, but so glad he survived it. It can be so very validating like you said to just have someone hold your hand and say, "This sucks. I understand how much it sucks." That acknowledgement from just one person can give you the strength to keep your public face on with everyone else.
Macy -
No thanks necessary!! We are all in this boat together, and I found your honesty so refreshing, it sparked something in me...I appreciate the chance to share my feelings here with you. You've helped me as well more than you know...
Another tactic I have is trying to hang on to the smallest 'good' thing. Like, ok, finances may be bad, extremely strained...but I can STILL afford to pay for my chemo at this moment. At least I have health insurance. At least I'm working with a paycheck. At least this, at least that...it's a real effort to do that, because it doesn't come naturally to me. But sometimes it can 'reset' my thought process a little to at least get me through an hour or a day. I'm a natural worrier, always have been, so I can FIND things to worry about under the best of circumstances, much less these circumstances. I envy people that can just let stuff roll off of them...my brain was just never wired that way...
Hugs to you and your families! We're still here!!!!!!!
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Well Boo...I can't find a way to message the mods to request the forum...does anyone else know how?
Thanks!
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Liz just find where they have posted add them to your friends list and then you can PM them.
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Oh - duh!! Ok!! Thanks, Chrissy!!
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Lizlemon, I am going to take your advise and start looking at some of the positive things that are going on in my life while I battle this cancer. I'm happy that I get to go to Calif. To see my kids and grandbabies this Xmas. I am very thankful for the wonderful insurance that we have, they haven't denied any tests, treatments etc so far. The next time I'm in one of those really foul moods I Will Focus on the Positive!!! Xoxoxo to you all.
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Thanks, ladies, for the advice. I spoke to my oncologist today about the rib pain and they are going to give me an MRI on my back. At least I'll know what's going on. Thanks, again.
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Laura - hoping that MRI turns out to show nothing bad. Hugs - LL
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Macy -
And just think you HAVE grandbabies! How awesome is that?! My son's only 23, so I'm in no rush - but I can't imagine the joy they give. Have a wonderful visit and take lots of pictures!
LL
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Macy, lizlemon, Scorchy,
Depression here too. And any stress prompts anxiety or rage. I have a history of depression though, which helps a bit as I know it comes and goes. I haven't been socializing nor working. Everyone with grandkids, who are seeing them at Xmas, seems so happy and for me the idea is another stressor. I feel it's pointless to bond with them so they will miss me when I'm gone. I used to be the stylish, active grandmother and now my eyes/nose run and it is painful to walk or use my hands. I feel so old and useless.
Anyway, I'm taking lamotrigine as I'm on the "bipolar spectrum". Titration of dosage is taking awhile, so not really effective for Xmas as I had hoped.
Bit of a self indulgent rant. I try to remember to be grateful, as I am lucky in so many ways.0 -
Chatter, I have grandchildren whom I have a wonderful relationship with. There are days when I don't feel like socialising with them or communicating with them but then I remember that it's not for me that I'd do it, it's for them and the memories that we build. Just as I have lovely memories of my nan I want my grandchildren to be able to say when they get together as adults sharing stories " remember when Oma............." And be able to smile at the rememberance or laugh the silly thing I did.
I know it's difficult for some to get passed the depression and yes it really does in most cases take a lot of work but it can be done. I think I hit my worst when my son at the age of 23 died............it took the aid of an anti depressant and some grief counselling and time. I took the antidepressant for about three months but continued the grief counselling for a while longer before I felt strong enough to carry on. What I'm trying to say to all of you is that if you continue to look into yourselves depression is what you are going to find. Looking out to the world and the people you love and who love you you will find joy and a reason to continue.
Memories are not made for us as we will not need them, they are made for the younger generations who will refer to them throughout their own lives.
Love n hugs. Chrissy0 -
Thanks Chrissy. You've been through a lot. I can only imagine the pain of losing a child. Something no parent wants to happen. I'm sorry you're also on the bc track.
I think if I saw them regularly, I'd be onboard but they moved away early this year. They are very involved with their other grandmother and staying with her. I will likely see them for an hour or two, amidst the family activities, which doesn't leave much time to make an impression or bond. I can't even think of gifts that will necessarily be appreciated or treasured. It's hard to share this as it makes me sound pathetic. I wonder if any other grandmother on here feels the same.
I think people on the bipolar spectrum tend to difficulties bonding and feeling close to others.
I do know it's important to get out of one's head. At least I could get out for dog walks to cheer me up and get exercise/fresh air and a nature hit but ive lost that, now I can barely walk.
Enough of the pity party. Time to be productive.0 -
Chatter I live a two hour drive from mine but stay in touch on Face Book and by phone. The kids really get a kick when I ring them and we often message conversations on FB.
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Mine are 1 and 3, no Facebook yet. I'm not much of a phone person, especially with little kids as it always seems stilted and parent-enforced. If I get a good long distance plan, maybe I'll give the 3 year old my number so she can call when she's in the mood. Kids are so tech sophisticated these days.
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I bought my DD a Kindle Fire HD for Christmas. It arrived early and she immediately set Skype up on it. The grands have been Skyping me every evening. They are in the Boston and I am in Idaho. Last night they read me bedtime stories and played with Monster High dolls. Tonight we chatted about school, the weather, and saw pictures they were drawing. Then I "joined" them for dinner. They had Mac and cheese and grilled cheese sandwiches, I had fettachini Alfredo. It was fun. I even get to sing songs (Jingle Bells and Itsi Bitsi Spider) with the 2 year old.
My DD sets me up in the corner on Christmas day so I can join in the opening of presents. It is the next best thing to being there. We have Skyped for years, but it took some preplanning for her to boot up the bigger computer. Now with the Kindle, it is as easy as a phone call. It is almost a present for ME!0 -
Scutlers that's a great idea and I should have remembered as that's what my sister does with her two grand children. She only gets to see them a couple of times a year so ever since the eldest one was about six months old that's what she has done so he got to know her and she could watch him grow. She now has a grand daughter who turned one last weekend and she still Skypes to both of them.
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