Bone Mets Thread
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Awilson, sorry you are having such a bad time with your skull and eye. How close to the eye is the numbing of the skull? Can you get another opinion? It seems you'll have to do something down the road.
I have to use a cane to walk, too. I use a special bar that hooks up under the mattress to get in and out of bed and even roll over. It's easy to install, so if we go away for a weekend, I can take the bar with me. I use a walker to stabilize myself after getting out of bed. Gees, I'm only 57, but I feel like I'm EIGHTY-SEVEN!
As far as Xeloda goes, some people get the hand and foot syndrome, and some people don't. Same with the diarrhea. Fatigue is the most problematic, I've found, and then you can't even sleep even tho you're dead tired! Yeah, Xeloda can be a little rough, but I'll take it any day over dry heaving, throwing up and losing all your hair with Taxotere, Cytoxin, and some of the other intravenous chemos. I don't get sweats at all...if anything, I'm cold most of the time, but once they switch me over to Aromatase Inhibitors (Femara, Arimidex, etc.), I'll probably start getting hot flashes and sweats again.
How long has the numb skull been going on? Was it before you started Xeloda? I'm asking because when I had my first Zometa bone infusion, the whole left side of my face went numb. It went away the next day, but it scared the hell out of me....Was I having a stroke? Coming down with Bells Palsy? But it was a side effect of the Zometa (I went on line and looked it up).
Good luck with all you're going thru. It's NOT easy. Hoping for good days for you.
Lita
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Mike - welcome to the bone mets thread. When you are late stage with multiple types of cancer, there really is no road map. For this reason, the only definitive advice I can give you is get a second opinion and a third until the treatment plan feels like it fits your wife like a glove. It's really an intuitive thing here. The doctors are not working off a cookbook at this point.
In general, with metastatic cancer, they do radiation only to relieve pain. Like when a met impinges on the spinal cord. Also if it is in a bad place. They are not trying to cure the cancer with radiation. I would expect that your wife will get systemic therapy of some sort. However, a couple things to keep in mind:
They can't reliably biopsy bone mets. They change from ERPR+ to minus or back (not sure) somehow through the procedure. The error rate is high. This is a thing. I hope some folks here chime in or you google this. I am not the expert. But it's very important to understand this and grill your doctor on the meaning of the biopsy results and the treatment decisions based on these results.
SBRT radiation is a type of radiation that also provokes a systemic response from the immune system. If you get into radiation, ask whether they would consider SBRT. It is used in combination with chemo sometimes with great benefit to patients.
Also, you are still dealing with bone mets. Despite all the complications in your wife's case, people with bone mets do well for a long time.
Finally, fill out your wife's diagnosis and treatment profile in your account and make it public. It will appear in your signature and help people help you and your wife.
And I hope everyone can take a moment to update their profile with their current diagnosis and treatment protocol. I think this is what makes BCO the most useful site with the most relevant discussions.
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AmyQ...I m another Minnesota girl enjoying our beautiful fall weather...glad you are able to get out and enjoy it...maybe we should just skip winter this year ! My granddaughter is 16 months and is truly my inspiration...I m determined to be around long enough so she will remember me !
Mike...read your post about your wife and her ER + and ER - BC....I was originally diagnosed ER pos..my bone marrow biopsy came back ER neg and was started on Xeloda with very good results so far. Discussed this at length with my ONC who feels it is likely it will change again...crazy
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Mary Evelyn (I had an aunt Evelyn
). Totally understand you feeling overwhelmed. I did too, and I think everyone here has felt that when they found out about their mets. This is a great group of people though and I've been so blessed to have found them. I was 9 1/2 years NED when mine came back and it is also extensive.Patty, I know this is late, but I'm so glad you are home, and hope and pray things are improving. And what a beautiful baby your great niece is!
Kaption, I did ask about my skull mets too and the onc said it's no different than any of the other they are dealing with, he said the spinal mets is more concerning because of the possibility of the spinal column being involved.
Corinne, So sorry you have joined us, but as I told Mary Evelyn, you will find a great group of folks here, willing to stand with you, and sometimes even help hold you up just a little!
Momall, prayers continue for you and Dani - hope you have some treatment options at this point. I do take Lorazapam for anxiety and it does help a little. I'm kind of scared of most medicines, because my brother was an alcoholic and a drug addict, so I'm really afraid of getting hooked on something!
Linda, your great nephew is gorgeous, what a blessing
Babs, so glad you finally got the opportunity to talk to your DD. I can't imagine what a burden it must have been carrying that around and waiting.
Amy, wow you have really been through it, but it sounds like things are starting to look up just a little, and so glad you got a night's rest.
Remz, I was 9 1/2 years out when they found my bone mets in August. I'm also on Femera.
My MO says yes to flu shots too by the way.
Lita, only issue with Femera so far is dizziness and I've had that in abundance. My hair is thinning too.
Louis, so sorry to hear of KD's problems with healing. Prayers for both of you!
dlb, the picture is new, thanks
I have very few pictures of me from the last ten years, seriously maybe three or four. I've always been so hard on myself and never thought I was pretty in any way, so wouldn't allow anyone to take pictures of me. At this point in my life, I've decided, what the heck!!!Chelle, I'm so very sorry for the loss of your grandfather. It's very hard to be a caregiver, I've done that too, most of my life, taken care of everyone else.
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In all of this, I have to say that I am continually AMAZED by medical science these days. Just about 16 hours ago my wife, KD, had a gaping open wound that was about 6" long and about 4" wide over her spinal surgery site where it had opened back up Saturday morning.
Yesterday evening, her Plastic Surgeon did a tissue/skin "flap" graft and flipped a portion of her Trapezius muscle on her shoulder blade and the attached skin into the wound. She now has what amounts to an 8" x 2.5" blue bandage over that, and they expect it to heal nicely.
Before the surgery, they paraded about a dozen nursing students in to see her wound because it was so rare. Most of them were shocked that they could see KD's backbone openly exposed once the removed the packing. It is a sight I will not soon forget.
Now, on to recovery from all of this and a transition to Arimidex (no more Taxol) along with monthly Exgeva shots. Just gotta say that I married one Tough Girl, just like all of you gals.
One Day at a Time,
Louis
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Hi Lita57
I got the numbness from the radiation, nerve damage from radiating my left scapula. They never tell you if you're going to get nerve damage they don't even mention it. My eye isn't numb it's just swollen but part of my skull on the left side is numb and it's been like that a couple of days before I finished my radiation. So far the Xeloda is okay. And like you say I would rather take the Xeloda any day over the other harsh chemo drugs. I guess we should consider ourselves lucky that we don't have the bad side effects of the Xeloda.
I'm 50 but I feel like a hundred. Just have to get the pain under control. Can they tell if the Xeloda is working after one round? I am finished my first round on Saturday.
I count each day is a blessing no matter what. I hope you have a fantastic day!! God Bless
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well I have had some progression, although we really do not know when it happened, my old oncologist hadn't done a bone scan for a year..( long story but no longer my oncologist) .so there are mets more places I'm not shocked as my tumor markers have been rising..I'm changing to Afinitor/Aromasin and xgeva on Nov 17...we are going on vacation next weekend so dont want to be changing now...there is a questionable spot on on my liver too
Amie
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Amie that bites I'm sorry to hear about your progression ,I truly believe we can turns everything around either with meds or with alternative therapy. There is just way to much info out there . When will they know about the liver for sure? Hate this leaving you hanging stuff. Are you taking milk thistle or any other living cleaning supplement? Where are you going on vacation?
Has anyone heard anything from Christine or Terra?
I wish you all a great weekend , pain free with tons of healing😊
Wendy
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Next scan if it is still there we will look at it closer, I have a genetic disorder that can cause benign tumorso. I am going to put it to back of mind for now, I honest
I was feeling better than I had in a long time..
We are heading to Boston for a long weekend...
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good afternoon all.
Too lazy to takes notes today so just saying g hello and hugs to all
I've been couched bound the last 2-3 days. Darn back is having debilitating pain again. Really thinking it's this crazy weather.
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Amie, sorry to hear about your scan results, praying your next scan shows differently and I'm glad you're putting it at the back of your mind right now. Enjoy your long weekend in Boston.
Wendy, I love your new avatar, you look awesome. I don't know how Crisitina is doing although she has been on my mind alot lately. I did pm Terre and she's doing well, she has been very busy with work.
Patty, sorry to hear about your back pain. I think the weather does affect us though, the minute it turned damp and rainy here my back started to hurt again too. Feel better soon!
Hugs to all, Annie
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Amie - Good luck on the A/A combo. That thread is getting busier lately with more people on that tx. It's good to see that dose adjustment is giving good results with lesser SEs. Sorry about darn progression. I'm curious to know if they compared your bone scan to a CT scan? My recent experience with what the bone scan showed was not reliable when compared to a CT scan. Enjoy Boston!
Amy - I'll bet you're happy surgery is behind you! Take good care of yourself, one day at a time.
Wendy - is that you on your avatar? You look stunning girl!
Patty - Hi! If you're talking about humidity/cold, I say it definitely impacts pain. I wish I lived in a dry climate...
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Hello all,
I haven't posted in forever but I do read often and think of you all everyday.
I was interviewed on camera a few weeks ago for a journal article and video companion to a professional development piece my MO is doing on HER2 metastatic breast cancer. I'm no expert, but was honored to be asked to share my story.
I traveled to DC last week with Metavivor. We marched from the Washington monument to Capitol Hill. I participated in six legislative visits asking for increased research dollars, the ability to try new treatments, and to reduce the waiting time for SSDI. I worked on Capitol Hill many times professionally, but this was the first time it was personal and it was deeply moving. It definitely felt good to do something concrete in this sea of pink October.
I'm trying to carpe diem. We went to NY to see the Lion King, my husband threw a big birthday dinner for me, the kids and I continued our apple/pumpkin picking tradition. I'm scared of this diagnosis every day, but there are some really good moments in there.
I had my first scans this week since last February. They still show NEAD. I am incredibly grateful and beginning to think I can hope a little for a future.
Sending you all my thoughts prayers and love. I fully recognize that so many of us are struggling. I am trying to use my good days and my voice for all of us, with full awareness that a time will come that I will need someone to speak for me.
Rachel
P.S.
Macaron sends his love, too.
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So much to tell you, need to put my head in order then.., I had to go to the specific threads, but think of you guys always...
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Awilson, they really can't tell anything after just one cycle on Xeloda. In my experience, they want you to go a few months on the drug before they check and see if it's working. Others may want to chime in.
Patty, sorry to hear about your back pain
(. Back pain is really annoying. Hope it gets better.I'm having the nasty, nerve shooting pain coursing through my lower back again...hope it's not the mets growing and pressing on nerves. Scheduled to have another CT in about 2-3 wks.
Amie, sorry about progression. That always sucks.
Lita
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Hello everyone I don't usually post because I'm usually fine but I just started radiation to my left knee and femur and I'm feeling like crap (sorry) I have shortness of breath, light headed, pain on my knee, nausea and fatigue. I've been off systemic treatment for five weeks and I'm afraid the mets are growing. I asked my oncologist to start Xeloda right away and not wait till radiation is finished. I just talked to the specialty pharmacy and they said they're looking for financial aid to cover the. 20% Medicare doesn't pay.
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Aurora, starting Xeloda should be fine since you're not having rads to your lower back. My RO doesn't want to start rads on my lower back again until I'm off chemo. He said the diarrhea would be too much since the beam would affect my colon, too. Already dealing w/enuf diarrhea just on Xeloda, but it IS manageable with Imodium and a sensible diet.
Lita
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ok, needed to see if I could get some opinions from you guys. I have no idea what has changed, but yesterday and today I am literally dragging and I mean I can't hardly put 1 foot in front of the other I am so tired ! I have never in my entire life experienced this level of fatigue, even going through the mastectomy and chemo and everything the first time I was never like this! And it literally came on within hours! Any ideas
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auroaya, I have just finished radiation, 2 times a day to left upper femur. I also took Xeloda at same time. My labs basically stayed the same. Other than feeling tired, I can't complain. Good luck, Su
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Thank you Su and Lita. I stayed on the couch all day and feel a little better. Thank you for your advise.
Aurora
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Gracie,
I don't have any great advice. But, are you eating well? I find I get extra weak if I don't eat well, or, if I'm dehydrated. If you get to feeling worse, it might be time to cal. Your MOs office.
Hope you get to feeling stronger soon.
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Thanks Kaption...I haven't been eating much. Dealing with this puppy has me so busy I've not paid much attention to what or when. I did think of dehydration this afternoon too so purposely started drinking more water and have put the pup in the crate most of the day (poor little guy😟). I thought having a dog would be really great, but I am feeling like I bit off more than I could chew
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Oh but wanted to add, The good news is is that the dog is taken my mind off of me!
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Gracie - consider allergies and infections. I had an undiagnosed UTI that knocked me out during the second and third month of treatment. I assumed it was the drugs and missed some obvious symptoms of UTI.
>Z<
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I will do that Zarovka... I h am having ongoing vertigo severe enough to have me stumbling around. So maybe I should get my ears checked out
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good idea, zarovka. I was wiped out by my latest sinus infection, but I was also having rads done at the same time. Perfect storm for fatigue.
Gracie, definitely mention the vertigo to your MO. I believe you have talked about that before. I get that and have since befor bc. Mine is also ear/sinus connected. But, MO needs to know.
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I will let them know this week, Kaption, I have to call first of the week anyway, so will tell them it's ongoing. Am definitely going to get my ears checked out.
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Gracie could I ask you, did you have an MRI of the head, brain? Could it also be sinus? Could it be TMJ? A friend of mine had such symptoms, and it turned out to be TMJ. She has now that thing in her mouth to sleep with, and is feeling much better. And reading on, I see what Zar said, undiagnosed UTI could have so many side effects! The Vvertigo could be a distraction, from something else really going on. And watch out for Doctor that are Quacks, they could make you crazy. vFor sure worth a check. Yay for your stability
Kaption sweetie how are you feeling now? Re: sinus, funny I wrote the same thing to Gracie.
Letmywifeli first terrific news. I must say Dani's onco in NY also stopped taking these markers, she still takes the CEA and the 15.3 although they are not true indicators in her case.
Louis it's so awesome how tender you write about your wife. And it's really weird that after so many weeks it should open up like that. Did you ask them why is that? I am reading on and I was thinking in the lines as Deanna, that something prevented the closure of the stitch. Unless someone really does a very stressful action on the suture, how does it just totally open up? Also, can you get a nurse to check on her once she comes home. In NY we that option when my DH had spine surgery, that's what I was saying, even If I could see pus but it's good that these nurses come in take BP, temp. etc…Hope she feels well real soon.
Aww Deanna thanks so much I will look into the link you sent. My hat off to you, as always
Awilson, again, Dani had something similar, no eye swollen, but vision got weird and numbness, after MRI after carefully looking at the scans, they diagnosed the trigeminal nerve was I think touching the sphenoid area, she had GammaKnife to the sphenoid and trigeminal nerve, why are they so blasé about your issues?
Rachel sooo happy for you. You go girl, such wonderful work. Are they specifically focusing on Her2+?I remember when you first came up here, happy happy birthday!
Aurora, Dani is having Brain Rads and she is on Xeloda and the other stuff. Onco said no way she could go off treatment. So…And for the nausea can you take Zofran before rads, it helped her.
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Lindalou first of all kudos to you for the marathon. So sorry about your family, this must be very tough. And I just saw your clip, wow that's powerful. Yes, I don't remember who, but a while ago someone did mention it here earlier. Very touching. Thank you.
Jen yeeh for you! Hawaii that's a plan.
LindaE I can't imagine when you heard of what's going on. Unbelievable. I did not realize they cannot communicate with different institutions. But in the States now, in a way, it makes me mad. Because if I wanna see one doc in a certain Hospital let's say, and then for a 2nd opinion, back when we did not have to tell doc#2 that we saw doc#1 and what he said blah, blah, now no matter what they have all info in the computer. There is a lot about that, that is not appreciated by me. But, yes, sometimes it could make life easier.Thanks for the caring. That picture, love it.
Corinne so good that you have MOM to help you out. Would it be helpful for your son to be with other children that are going through the same stuff, like Gilda's club etc…or you prefer he does not mingle with these kids yet, just a thought.
Deanna you are so right that docs don't inform enough. But DILAUDiD seems also to do a better job I think.
Mary what kind of rads are you getting for the mets? Dani's docs kept procrastinating because they were all hoping systemic therapy would help, and it's now out of control. She did have Gammaknife and some rads, but not enough. Now they are doing tonz and it's in her brain already. Ask for Zofran, if you feel nauseated.
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Patty it makes us all feel so good that you are happy. Patty this little one, aww this is the good stuff. So sorry you bummed out, would the patch in low dosage help you get through it?
Babs oh sweetie. I think it's so good for you that you were able to finally tell her, she is your good friend, and she will feel better she knows also.
Vevs Xgeva is supposed to strengthen your bones. But it's recommended that you do not have extensive dental work while on it, if you didn't take it yet, it's best you first make sure you don't need the dentist. As Lita said either Zometa or Xgeva.
Amy It's really not easy to ask for help. Hope you feel better soon. Aww grandparents day the best! The other I took Dani's girls out window shopping and everyone was saying what a good grandma I am, I thought it was odd because maybe I was the one having the best time! Amy so funny about the therapist, my Hubby had spine surgery, and after first visit from therapist, he told him thanks but no thanks, we knew more by going on Youtube than therapist did. The visiting nurse was helpful, but also for a very short time, and then we also let that go. Too many silly things.
Chelle aww sweetie, so sorry. So much burden that you went through. And how do you feel about the decision of no MX? Your words are very kind. I did also take care of my parents and in laws, and I tell you the truth I don't know any different, I know she literally put her life in my hands, how can I not. And all of you are always on my mind.
Lynsline, I guess your doc thought it to be the right thing to do. How can others make this decision? I kept thinking Xgeva and most are taking it monthly, now I don't know.
Lita, yeah, Dani lost 2" also. So many mets, it's a miracle she is standing. And they only radiate when she has much pain.
Remz here we request the CD's, my daughter is able to get it before she leaves the place. But different places have their own set of crazy rules, some only wanna send it to you. Sloan, someone I know is going to Sloan, he has to get it mailed to his home, and he could not even get his primary to receive a copy of the report, but he has to get it from Oncos' office, or wait till he gets it mailed. Ridiculous, power, power.
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