Bone Mets Thread
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Broad Institute posted this today.
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Lwritell, good Question! I got a flu shot and no problems. I'm supposed to get the pneumonia one, but I will ask if it's live or not. Not going to take any chances.
Lita
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Lindalou thanks for posting the video about the project I sent in my sample about two months ago. Do you know when will we know the results
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remz - I am devastated that it has been so tough. the pain and fatigue are mentally debilitating and for that reason alone, quite dangerous. i have had some bad weeks and it gets hard to see beyond the immediate pain and fatigue. I don't know anything about clasteon, but I would be aggressive about dealing with the pain and fatigue. Complementary therapies have worked for me ... acupuncture, lymphatic drainage, yoga, body work, energy work. And of course adjusting the standard treatments is something to consider. When I can't exercise, I know that I have to fix something fast.
Sending you healing thoughts and strength.
>Z<
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aurora. Sorry to hear of progression. Hope radiation goes easy on you while killing those darn cancel cells
Vevs. Lol. The blonde dog looks like he has a wig on. So funny
Been doing good. Everyday I am feeling a little stronger and less pain. Almost back to where I was before the last hospital stay. Yes
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Hello everybody! I once again have been absent from the boards for a while. I am NOT having the bmx. The tumor board decided against it. For that I am relieved.
My Grandpa passed away on sept 30th. I have taken care of my sister, Dad, and my Grandpa, at the end of life. My Grandpa was by far the most difficult. He had what is referred to as terminal agitation. He was yelling and flailing for his last few days. A very horrible thing to watch. Once we realized that he was never going to snap out of it, we began to give him haliparidol and morphine. It calmed him almost immediately. A few hours later, he was able to release himself from his ninety seven year old body. I can feel his happiness.
Mom- you are an incredible woman. I can honestly say, I have never known anyone, to be as attentive as you. You are an inspiration to all,of us!
Patty- I'm so happy that you are feeling good! It's always nice to hear from you.
My little house is going up fast now. It should be finished in February. I'm so excited!!!
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Chelle,
Blessings to you and your family.
And, your house looks like wonderful home for you.
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I had a hip replaced 6 months ago due to Avascular Necrosis. Once I started researching this condition, it sure sounded like it might be caused by the same meds that cause Necrosis of the Jawbone. I've been on monthly XGeva for over 2 years. I found one reference to Abnormal Femur Fractures related to biophosphates (like Fosamax). It seems the DEXA Scans come back with good numbers but the bone itself has microcracks in it leading to the femur fractures. I've backed off the XGeva from monthly to every 4 months and am hopeful I get the protection from the XGeva without the side effects where I have to have the other hip replaced. Anyone else having any issues related to frequent XGeva injections or Avascular Necrosis???
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I got up the courage to have my dh measure my height since this nightmare began, and I have lost TWO inches because of compression fractures and cancer eating away my spine. Not good. Hope the zometa helps.
Lita
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Hi Lita57
I also have extensive bone mets. I had rads on my spine in 2015 because my onco said it can compress into my spine and I'd end up in a wheelchair😬 I was doing very well since my met diagnosis in April of 2015. I juiced and had a very good diet. I also do coffee enemas because when you juice, it kills cancer cells and coffee enemas are one of the quickest ways to get rid of them. My bone scans for over a year came back stable but the last two scans I had showed very mild deterioration in my left hip. All of a sudden both my hips were really painful and my left scapula. I ended up getting radiation in those two areas but the pain seems to be worse. I can't walk without a cane and I can't go anywhere by myself for fear of falling. I'm hoping the rads pain is only temporary. I also just started xeloda, on my second week and so far so good!!! I'm hoping that the se of this drug is tolerable
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Hi Awilson...yes, I had radiation to my spine, too. The RO said I was about 2 weeks away from paralysis because the tumors were already compressing my spine back in April 2016. I ended up in emergency one night because the pain was unbearable...never had pain like that in my life (way worse than labor pains!). Bone mets can be brutal. I have mets in my hips and pelvic bones, too.
They will do another scan in November to see how things are going. Got a funny little bump on my left kneecap now, too. Gotta see what's up with that because it hurts periodically.
Xeloda has some SE's, but they are manageable. Check out the Xeloda thread for more info. It works quite well for some women. I've heard that some women can actually work when they're on this pill form of chemo, too.
Take care, Lita
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Lynsline,
I had my hip replaced 12 days ago and one of the conditions diagnosed in my hip was avascular necrosis, besides arthritis and bone mets. I've been researching the Xgeva connection and have come to realize it's a very real side-effect. When I finished chemo over three years ago my onc recommended monthly xgeva shots which I had for over 2 1/2 years. My new onc has reduced Xgeva frequency to every three months so i guess we have to weigh the benefits versus SE.
I've had a BMX and have to say the hip replacement has been far worse in terms of pain and recovery. I am looking forward to feeling back to normal and having increased mobility, but until then...patience.
i hope you are well and have recovered completely from your hip replacement.
Amy
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remz hi I'm in Vancouver have been treated here now for a year and I have not seen one scan....asking doesn't help either.
Wendy
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hi,wendy, I never remember ever seeing a scan or an xray even the last time almost 15 years ago. Im going to request All my info so I can see for myself. I think it may take awhile tho as im not scheduled back until maybe the end of November. Im still waiting on Ibrance approval from my insurer..that alone is a pain. I like the onc i have this time.the last one was great too but she has retired. You say asking doesn't help. I believe they are required by law to release your information to you. What road blocks have you encountered?
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Wendy, do you have someone at your medical facility who works as a breast cancer nurse navigator? Sometimes you have to enlist their help to get anywhere. You really have to push sometimes. I don't know, sometimes they think we're morons and won't understand what we see. We're more medically literate than our parents were 40 years ago.
Can't believe they won't show you the damn scans! My MO says she can't read them very well, so I simply asked for an appt w/the RO who knows how to read them. He showed my DH and me the two previous scans I had side by side. He said there wasn't much change, but I felt more in control being able to actually SEE the scans myself.
Good luck, Lita
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Yes, my RO takes me on tours of my scans.
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I think I'm pretty lucky, my MO shows me the scans and explains them. I know the Canadian health system is different than ours but it's a law here that the facility that took the scans has to give them to you if you ask and sign a release. Good luck, I hope you get them or at least can ask the RO to explain them.
Faith (in the future)
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chell. House is looking. Good
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Hi everybody! I have gotten so far behind, still dealing with this vertigo and it's getting out of hand! Also I got a new puppy about two weeks ago, So am dealing with housebreaking! Ugh!!! Went to the Onc and my tumor markers are down for the first time since I started the femera, i'm hoping and praying that that's good news . Will try to get back on here this afternoon and get caught up with everybody!
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Gracie, tumor markers down...great news!!
Are you having any other issues w/Femara?
Lita
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Hi All,
Haven't checked in for a while here. My wife's second set of scan results came out since diagnosis back in late February (scan every 3 months). She did CT and Bone scans. Both showed signs of stable / healing disease. Her blood work is normal too (CBC + Metabolic panel) including liver functions and Alkaline Phosphate.
However, at the same time her CA 27.29 shows a 14 points increase over last score of 151 taken a month back. When she was diagnosed back in late February, the number was 995 and then gradually declining. She has no pain anywhere (was in severe pain when diagnosed) for a long time now and no issues overall (feeling fine).
Her Onc @ Stanford discounted the 27.29 numbers telling since every other result and physical symptoms are fine, we should not worry about it.
Would love to hear everyone's opinion here.
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Letmylifelive,
That is exactly what my MO says, too. If scans and pain indicated stable/healing- disregard the TMs.
It sounds like she is heading in the right direction! Congrats to you both.
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Letmywifelive,
Good to hear from you again. My opinion... Celebrate all that wonderful news. Tumor markers, to me, are kind of like blood sugar or blood pressure numbers. Yes, they fluctuate. Yes, you monitor them. But, the time to really worry is when they spike, and 14 points is certainly not a spike.
As I type this, KD is currently hospitalized. She had spinal fusion surgery on September 12th where they fused her C4-T4 vertebrae. That surgery was very successful and KD appeared to be healing wonderfully.
Unfortunately, this past Saturday morning, her 6" incision site suddenly reopened completely leaving a gaping open wound in her back. She is receiving heavy antibiotics to prevent infection while we wait for the Neurosurgeon and Plastic Surgeon to decide on the best way to treat her. Suturing it back together is not an option.
The good news is that KD is ER+, so she will transition from weekly Taxol to Arimidex as soon as we have a decision on treating this open wound. So, we don't have to leave her cancer untreated while we address this acute situation.
Fortunately, KD is not experiencing too much pain. Amazingly, her spirits have been wonderful. She is like a tall evergreen tree swaying whichever way the wind blows her. I just love that about her.
Living with MBC has taught both of us to not have all kinds of expectations, but rather just to take whatever comes and walk through it one day at a time.
Blessings to all of you,
Louis
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letmywifelive, I had a concern about rising TMs when I saw my UCLA onc yesterday, and she literally waved them off -- probably more so than ever before. She said too many things affect them, from inflammation to when they're done in our meds cycle. She said they go by scans and she would only pay attention to TMs if they literally double in a one month period. Mine are in the 300's, and had actually gone up for 3 of the past 4 months, including a 90 pt. jump two months ago. Last month -- many months into my current regimen (Faslodex+Ibrance), and with no obvious explanation for a switch in direction, they took a 50+ pt. drop. From now on, I'm not going to stress about these ups & downs.
Louis, I'm so sorry to hear about your wife's complication from surgery, but wonderful that her spirits haven't been dashed. I actually think that Taxol should be stopped immediately with an open wound, and I hope she hasn't received it since her surgery, as any chemo will prevent a wound from healing properly. Just my opinion from my own past experience with a much smaller open wound following DIep recon.
Lita, beautiful new avatar! You look so pretty in red. And Gracie, I'm thinking your avatar is also new -- or at least I don't remember it before. Great to put your pretty face with your name! And handsome avatar of your canine family member, Louis! Speaking of photos, I love your new house, Chelle! Fun to see it in progress. I hope you'll keep sharing updates as the work continues! What's your tentative move-in date? Patty, Serenytee is beautiful! And I enjoyed the sinkful of purple basil (not familiar with the purple variety, Mary), and the dog photos from Lita and Vevs.
Once again I'm a bit behind on reading -- just skimmed photos! -- so apologize for possibly not responding to other questions at the moment.
Hope everyone's week is off to a good start!
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Just shared this link in a new topic post, but wanted to share it here especially for MomATT, Cristina, LongTermSurvivor (Stephanie), and anyone else who might be having an especially difficult time and would love some free organic meals delivered! Looks like a wonderful opportunity!
https://www.warriorsinpink.ford.com/more-good-days...
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Deanna, I was just going to ask about Christina. Can you share with us how she is doing?
Chelle, your house is really coming along. Won't be too long now...condolences on your Grandfather. I'm sure he knew you were there.
Auroaya, Last I heard MBC project will post some data in about 6 months.
Amy, How is your recovery coming?
Wendy, I always get to review my scans with MO and RO. I can spot new lesions easily now and can point out on scans where my pain is. It is very good for me to actually see the images.
Hope all are enjoying some fall weather. We are just past peak here.
Louis, Please tell KD that we are pulling for her to recover quickly.
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My wife got her PET scan results. Small bone mets to the spine after 12 months or so NED. They are going to do a biopsy to determine what type it is as my wife had triple negative and ER+ BC at the same time. She'd previously had ER+ met to the spine.
What type of treatment is she looking at? Radiation? Chemo?
My wife's BC history. My wife refuses to use the internet, well except for Amazon and Ebay.
My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.
A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has two cancers, one ER+ PR+ HER2- and another triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.
After all that she had to have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign.
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juat popping in to say hello. Esp glad to see some men continuing to post on their wives behalf. Your wives are lucky to have such supportive husband's. I hope you will feel welcome enough to continue to use these boards. Also hoping your wives will someday decide to join us
Hugs to all
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Good Morning All,
It's been two weeks since hip replacement surgery and I think last night was the first night I slept through the night and without having to wake up and take pain pills. What an improvement. I don't know why I thought this surgery would be an easy recovery, maybe because the pain I was in that lead up to the surgery was so out-of-control and debilitating, but this recovery has been harder than my BMX. Some of my anxiety results from my dependence on others, initially, so completely. I couldn't move without the help of someone physically moving my leg to get off the bed or chair, and then to stand at a walker and move into the bathroom. I have never been so completely dependent on others in all my life. I seriously do not know how those older folks who fall and break a hip handle it. I'm 61 and this has kicked my butt, I feel terrible for older people who have to go through this.
I should focus on all the improvement I've made and be happy about it. Thankfully our weather has been beautiful so I'm able to get outside for a bit and enjoy the sunshine.
We had to close the pool while I was in the hospital, but I wouldn't be able to use it now anyway so I'll count the days until we can open it again. Next summer is going to be the best! Even though we had about 6 weeks use once the pool was in and water stable, we used it like crazy. My grandchildren have become little fish which just thrills me.
Well just a little update - I hope you all are well. I'm off to grandparents day at my grandchildren's school. Donuts, coffee and little programs by each of the grades. I'm happy I can go.
Amy
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Hi Lita57
Well I hope all goes well for you Lita:) We have a fight to win and a long journey which we need to make as smooth as possible.
I agree that bone mets are very painful. I did ten rounds of rads on my hips but now they are worse and at the same time I had my left scapula done also. Now I have a swallon left eye and a numb skull. Now they are saying that if I don't get radiation in my numb skull, it will get worse down the road but if I do the radiation on my numb skull I'll have a damaged left eye. Both my legs from the knee down are numb and swallon also. I now need a cane to walk. Im also seeing a natural doctor and is an onco/homeopathic doctor. It's worth it to get as much treatment you can for bones. I am almost done my first round of xeloda and so far I'm just getting the sweats at night and the day sometimes. I hope that's all the se get. I will keep you posted on my natural doctor and I would like to hear how you are doing.
Have a great day and God Bless us all👏🏻
I'll pray for you:
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