Bone Mets Thread
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hi everyone, getting late but want to drop a quick line. I had a lot of reading here to catch up on. 1st, I love the quilt , I am a quilter too. My last one is waiting to be quilted, it is a t-shirt quilt for my sister, whose daughter committed suicide last Feb. it was such a heart wrenching ordeal, that I blame it for my cancer spreading. She asked me to make quilt, can't say no to that.
NYC was awesome. I felt like I was on one of those Make A Wish... Trips. My sister-in-law & her husband went above & beyond to make sure we had a great time. They live in Larchmont, so we took train into city everyday. This Fl girl never has experienced this train/subway lifestyle. We were treated to Rockettes, a play, a comedy club & dinner in some wonderful restaurants.i drank protein shakes prior to going & felt so good while we were there. I had seen MO day before X-mas Eve. She was concerned A/A was not good for me, knocked my counts very low. We agreed to deal w/it after our trip.
Some may remember I tried Quadramet last sept or October, can't remember when. It attacks bone cancer. It helped decrease my pain immediately. I got news Christmas Eve that my tumor marker which had been steadily rising since last Feb had dropped by 20 points. I know it is what my RO has been waiting to hear. So, this coming Monday PET scan time, know MO is waiting for progression, but I am praying otherwise.
It has been difficult week w/hearing of friends passing. So hugs all around, keeping us in my prayers .
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Rosieo, I take a 500mg Tylenol & a 200mg Ibuprophen. This was the recommendation of my MO. Good luck, I hope it works for you as well as it works for me & my DH. Cheers, Dee
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Hi everyone,
Thank you so much for the pain management info. I've never been much of a pharmaceutical taker but did have a bunch of pain meds for a compression fracture before Christmas. The constipation was awful and I have no desire to repeat that!I just started xeloda this week. No issues to date and fingers crossed it will work. The RO recommended no radiation for at least a month so they can measure effectiveness of the xeloda. Wishing you all a good day and a wonderful weekend.
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Mary sweetie, i truly get strength from ppl like you. Just remember take the meds as soon as it hits, bcs it does take awhile for it to kick in, at least for me.
Nikki- you mom was put on excellent tx. you know, Perjeta is quite new, it works for a lot of ppl w Her, and MO seems to leave the Tax for when it's needed, and start with easier stuff first, which coudl very well work. Keep copies of BT so you could know where you are holding, and copies of the scans so if you wanna look back and compare, or and go for a 2nd opinion you don't have to beg ONC's office. And keep tabs of the tx, so you will know the history. You could take something for your anxiety, I do, try to give things a chance. I am always praying for new treatments to come about, so we always have more chances of doing well. Your mom will be making progress, make sure she knows that. Hugs to you. It is absolutely a nightmare, yes, but let's make some lemonades.
Sue yes I remember the Quadramet, so glad for you. And your chance to go with the trains. Hmmm, i could forgo it. I live in NYC. But I am glad we have very accessible transportation. Good vibes for your scans.
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I usually take 600 mg ibuprofen at a time, and I don't take Tylenol. The ibuprofen helps w headaches and with my bone mets pain. I don't think I'm going to get through to anyone about the pain, so I'm going to just have to help myself. I came to the conclusion last night that though my care providers try to help me, none of them really have enough time for me. It was a sad realization. I can't even get into a psychiatrist bc the one recommended won't return my calls. My oncologist is away this week and her nurse refuses to help w pain meds. All she said was go to the ER if you feel you are going to go into withdrawal. Umm, no, not doing that. I'm pissed that no one has time for me. It's a bad feeling. But at least the ibuprofen does help me to some degree.
Momallthetime- are you in NY? I am from NY and live in NJ. I am just curious where in NY you are. If not too far, maybe I can visit?
Nikki, if your mom is feeling better, try to enjoy that feeling and try to embrace it. We have to live in the moment and take joy where we can find it at any moment. Please just spend time w her and take care of yourself too.
I am sorry for all those with migraines. I do get regular headaches but I take ibuprofen and it seems to help. Both of my sisters suffer from headaches, one has been diagnosed w migraines the other hasn't followed up with a doctor about it, but it seems like it is migraines.
I hope more people post on here, seems a little lonely...
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All politics aside, this quote from President Obama's state of the Union address gives me chills every time I read it.
"For the loved ones we've all lost, for the family we can still save, let's make America the country that cures cancer once and for all."
Obviously, I don't care which country cures cancer, I just want all of us to be the family membersthat can still be saved.
I am really hopeful for the work Joe Biden will be doing and excited that it was launched today at Penn, where I'm treated. I am thankful every day that I was diagnosed in the age of modern medicine and have access to world-class healthcare. I'm eager to ask my MO next week her opinion of the initiative and any insight she has from interactions today.
I've done a lot of work with federal agencies, and breaking down silos to double the rate of advancement is ambitious. Admitting there's a problem is the first step, right?
Here's two links:
http://www.msnbc.com/msnbc/joe-biden-cancer-initia...
https://medium.com/@VPOTUS/inspiring-a-new-generation-to-defy-the-bounds-of-innovation-a-moonshot-to-cure-cancer-fbdf71d01c2e#.xkq2xmj63
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Good morning Ladies,
I have a dilemma and would appreciate some input.
There is a couple who have been friends of mine for the past 8 years. They are a very kind and gentle spirited couple and have been married for over 60 years. We go to the same church together.
The wife had breast cancer approx. 5 years ago and had a lumpectomy w/ radiation. Apparently in the last several weeks she has been having constant headaches and they don't know why. Well considering I have MBC of course the first place my mind goes is does she have MBC as well? But, I don't want to just blurt that out. She does not have a history of having headache issues. Her husband told me this morning that they are trying to get her an appointment with her dentist to try and figure out what is going on. Everthing in me wants to suggest that they call her oncologist, but I don't know if this would be appropriate.
Should I say something or should I take a wait and see position?
Thanks for any direction.
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Happy Friday everyone,
I have a few minutes while my DH is napping, so I decided to check in to see how everyone is doing. Unfortunately, I am so far behind that I have not yet been able to catch up. I will read all the posts soon. I did see the pictures of the quilts, and they are all beautiful. My eyes filled with tears when I read how special they all are.
I am still in Boston sitting in my DH's hospital room. I don't know when I posted last, but there was a major setback several days ago. He became quite ill one night, and they did a nuclear scan on his liver and gallbladder because his bilirubin and liver enzymes were climbing again. They discovered a very inflamed gallbladder (but no gallstones). They felt that they should not remove the gallbladder now because his body needs to recover from everything else he has been through during the past three and a half weeks. Instead they recommended placing a drain in his gallbladder, leaving it in place for six weeks, then removing the gallbladder at the end of that time. Placing the drain was a simple procedure, and DH was awake for it. As soon as the procedure was finished, my husband was moving from the op table for transfer to recovery when he started trembling and spiked a fever. His heart rate shot up, and his blood pressure plummeted. Bacteria from the gallbladder had entered his bloodstream. Luckily they started pumping antibiotics and fluids into him right away. He has septicemia. He spent two days in ICU but is now back on the regular floor. He is being treated with three antibiotics.
Here is the good news: 1.He is doing well. 2. He will go home on Tuesday. (Could have gone on Sunday but didn't want another "simple" procedure to put in PICC line for just 2 days of IV treatment at home.) 3. The surgeon feels he got all the cancer during the surgery 3 1/2 weeks ago. He will have regular scans to look for recurrence, very stressful as we all know but it's okay, and maybe oral medication to help prevent recurrence. 4. When they returned DH to this floor they put him in a private room and had a cot set up and waiting for me. I am now here round the clock. As DH was rolled into this section, all the nurses and aides applauded and greeted us with big smiles and several gave me warm hugs
It is a good thing DH was in such good health before all this happened. He wouldn't have survived all this otherwise. I never could have imagined that so many things could go wrong. In the end, all that is important is that he is okay. We have two more visits down here later. One to remove the gallbladder and the other to remove the stent in the bile duct. I am dreading them both.
We have met many wonderful, warm, devoted staff members at this hospital. They work very hard and have helped us through some tough experiences. Our lives are richer because we met them. Many healthcare workers are unsung heroes in my mind.
Have a great weekend everyone. I promise that I will be a more thoughtful poster soon.
Lynne
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Sue, yes I remember the Quadramet and happy to hear it brought you pain relief. Keeping fingers and toes crossed for good results! And yay on TMs taking a downward swing.
Cristina - I'd like to chime in on pain control. My first nurse navigator was very good to me for info on pain control. One of the things she insisted on was to take Tylenol and an anti-inflammatory along with my narcos. Tylenol boosts the effect of the narcos and the anti-inflammatory. I certainly see a difference. Also, when taking breakthrough meds, add Tylenol with it if your last dose is 6 hours apart. I also hear you on withdrawal, I did that as a novice and felt like crap until my pharmacist arranged for a weaning process.
Bluefrog - thanks for the links, will certainly read.
Jazzy - I'm hoping her dentist will steer her in the right direction if her BC history is known. Without mentioning brain mets, perhaps casually mention that any new headaches that go on for several weeks should be investigated knowing there could a multitude of causes.
Nikki - your Mom has a good plan in place and wishing her the very best.
Mommal - You and Dany are in my thoughts.
Dee - good luck on TMs! Do you have results yet?
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Jazzy, I just saw your post. My mind also goes to MBC, but that is natural for us. There are many things that can cause headaches. I would at least suggest that your friend see her PCP and look into it by doing tests. It seems a better choice than a dentist. I assume that her PCP is aware of your friend's history of bc and will not overlook those possibilities. I would not want to take a wait and see approach because it is important to find out what is going on as soon as possible.
Lynne
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Lynne, Guess we were posting at the same time. Wow, when it rains it pours! Indeed he is a strong man and I'm sure your presence and love has a lot to do with it. I remember staying at the hospital around the clock and it is sooooo tiring. Going home will be divine, huh? Thanks for the update, you both are in my thoughts and prayers.
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Sue, I saw my RO for a followup and he mentioned possibly Quadramet as a possibility. He gave me the handout and if I remember correctly you did ok with it?
Lynne, so good to see you post. Those hospital cots aren't too comfortable, but your presence with him will make all the difference. It is encouraging that you have a very compassionate and qualified medical team. Don't forget to take care of yourself as much as you can, and we all are celebrating both of you coming home soon.
Jazzy, I agree with suggesting further followup with her PCP.
Rachel, thanks for the links and with more funding for research better treatments and discoveries will be made for all of us.
Good weekend to all...
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Aw Lynne, that is so stressful. Wow your husband has been through a lot! I am so glad he is going home next week to the comforts of home. Maybe then life can resume as usual with maybe more appreciation for how precious it is! I give you credit for staying w him, don't know if I would do that myself for my husband.
Jazzy, I think I would casually recommend a followup w her PCP and oncologist (as long as she knows that you know she had breast cancer). It might be awkward but it could help her.
So, I'm going to run out of oxycontin. Put a call into pain management yesterday to refill and of course they didn't do it. I'm already yawning and shivering. Going to be a fun fun fun weekend of detox from the oxy, you know I'm going to be scrambling in my medicine cabinets for anything to help. Does anyone know how I can get any meds to help get me through this? Oncology office refusing to step on pain management's toes and recommended yesterday going to the ER if I can't handle the withdrawal (from the Subsys. I was so distracted by getting my Subsys that I forgot until yesterday to refill my Oxycontin). I am trying to avoid that. Where else can I get the meds I need? I hate being in this position and think I am going to work on weaning off these meds. This is such a humiliating experience for me. I am going to go upstairs and take a Tylenol though, that might help me. Any ideas are appreciated.
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Hi all!
Cristina, I have to second what Linda says about taking Tylenol with the Ibuprophen, both my MO & PCP said that you have to take both, they make each other better, working in synergy. I'm so sorry that you are in this situation. Do you have a PCP that you can call? I don't know how things work in the US, but if you run out of meds here, Emergency is the best bet to get something to take you over the weekend.
Lynne, Wishing that DH gets better soon & the two of you can head home. Being in hospital is so draining, there's nothing like being home.
Nikki, Hopefully this plan will help with your mom's strength, hugs to you.
Sue, sounds like you had a great trip.
Jazzy, I would try to broach the subject like others have suggested, that an ongoing headache should be looked at more closely. We all jump to mets immediately but there can be lots of other reasons, as everyone here has been telling me with my headaches.
I know I've left people out, I'm a bit scattered today, so please forgive me it's not intentional. I'm still on pins & needles waiting for my TM numbers.... will let you know if/when I hear something. Cheers, Dee
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Lynne, so glad to hear that your hubby is slated to go home on Tuesday! It sounds like he's had a really long haul with all of this, and no doubt he will be very happy to finally get home! Whoever would have guessed that you'd suddenly be thrust into the role of caregiver on top of your own mbc! Hugs & prayers that things go smoothly from here on out. And you are so right about the benefit of being healthy going into something like he's been through! I hope his body rebounds quickly and that he'll soon be his old self again.
Jazzy, I don't think there's any point in alarming your friend about what is most likely not the cause of her headaches. Besides, having had breast cancer, I'm sure it's at least crossed her mind, and starting with her PCP seems like the best thing to do -- just in case it's something potentially serious in the realm of high blood pressure or other cardiology or circulatory issue. Or it could be something as simple as the crazy stormy weather and erratic air pressure we've been having on the west coast. I don't think suggesting mbc will accomplish anything but worry them unnecessarily. But I would urge her to see her regular doc, as well as a dentist, if they believe there's some reason that could be the cause.
Cristina, I am also a fan of ibuprofen+acetaminophen -- usually a 400 mg. liquid Advil + 250 Tylenol. Otherwise, I think going to the ER for pain and/or withdrawal help may be your only choice. But how ridiculous that your doc would tell you to take what you need if it puts you in a position or running out and not being able to get more. I know someone above suggested ice. I personally grab the heating pad when my bone mets pain acts up.
Sue, I"m so sorry to read about your niece's suicide. What a tragedy. I'm sure your sister will treasure the quilt you're making for her.
Hugs and happy weekend to everyone. Deanna
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Hi All
This is my first time posting on this thread. I was on Ibrance/Letrozole for about 7 months when my bone & liver mets were discovered on 10/1/15. I don't have any symptoms at this point. I was then put into a clinical trial for GDC 0810 which didn't work and on 1/1/16 I started Xeloda. (I started on Xgeva on 10/1.) Today I had a a biopsy of my rt axilla for the Impact Assay Study-testing of genomes for future treatment purposes. Although my rt axilla lit up on all scans, the dr today said the initial test shows no malignancy. This is the 3rd time they've tried to get tissue for the genome testing. Next step will be a bone biopsy. I was wondering what this entails? Can someone please share their experience with a bone biopsy. My mets are in my skull, rt femur, T8 L1 L2 Kind of concerned.
Thanks
Babs
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Babs, my bone biopsy was taken from my sacrum. They used CT scan to guide them, so it was done in that room. I was given an IV and placed on oxygen. The nurse accompanied me to the room and just as the doctor was getting ready to get the sample, she injected medicine into the IV. I remember being so scared, then so surprised that it really wasn't bad. I had to go to the short procedure unit afterwards and stay for 6 hours so they could watch me for bleeding. I didn't have any bleeding or any pain afterards. Hope this helps in some small way.
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Cristina so sorry for what you are going through. I love heat for pain either heating pad or hot bath with Epsom salts. The er is the most likely place to get help over the weekend but I would call the on call provider first and tell er staff "my doctor told me to come here". Good luck.
Lynn my thoughts are with you and your husband. Do remember to care for yourself. Wish I could bake you some cookies or a healthy. kale and quinoa casserole (if thats more your thing).
peace
mary
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Lynnwood-yes it helps a lot! I always like to know what to expect!!!!
Thank you,
Babs
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Babs, I too had a CT guided bone biopsy in my sternum. Like Lynnwood, it wasn't nearly as bad as feared. They froze the area very well & after a couple of checks that I was indeed frozen they took the biopsy. It only took about 1 hour & I was allowed to leave. DH & I left on vacation immediately, had no SE's at all. Good luck, Cheers, Dee
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Hi All,
Finally got my TM's, though the lab "forgot" to do CEA, which they didn't do last time either, I suspect that the MO will not be pleased. Anyway my CA15-3 is 9.6, normal is under 31.
My friend says it's the only time I've been normal & stable, and DH says he would like a second opinion. ;-) Thanks again for all the support. Cheers, Dee
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Dee
That's great news about your TM's-thank you for the info too!!!!
Babs
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Babs, I had a bone biopsy on my backside pelvis which too was CT guided. It was pretty easy and pain-free. I did get nauseous from a sedative but all in all, it was fairly simple and took less than an hour from start to finish. Good luck - where are they going to biopsy?
Amy
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Amy
Thanks for the info on your experience-it helps to know what to expect!!!. I'll speak to my MO on Monday to find out where they'll take the biopsy from. I'm feeling like a pin cushion!!!!!
Babs
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CJanet--I can't believe your oncologist is leaving u high & dry. My MO makes sure at every visit I have enough pain meds at home. I do fentyl patch every 3 days & oxycodone. Do u have Ativan? I keep that on hand too to help me sleep. Also phenergan if u start getting nauses .
Babs--I had bone bx left hip area. They wanted to give me versed, but I refused. They insisted on giving me fentyl IV, but my high tolerance made me not feel it's effect. The only discomfort I felt was when the needle was pulled out, they did do local at injection site.Su
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Thanks Sue- from what everyone's written it's not a big deal-thankfully!!!!
Babs
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Hi everyone! Welcome to Babs!
Lynne - wowsa. That is so terrifying. So happy your DH is better and going home!!!
Dee - hooray! Love your DH's sense of humour. Mine would have said the same about me, I'm guessing.
Cristina - hope you get relief soon.
That's as much as my brain can hold right now...don't mean to not mention everyone - you know I love you all!
I'm back home from Auckland (hooray) and will be in full on kitten rescue mode tomorrow. Twelve male kittens arriving from Wanganui (a town about 2.5 hour drive from my house), then down the road to pick up a momcat, then to the next town to pick up a mom with 5 kittens, the drive 1.5 hours to the Kitten Inn, drop them off, then go to a fundraising (for Kitten Inn) meeting.
Here's a funny kitten/cat story. Susan, who runs KI, went to pick up a cat. It had multiple toes (more than normal). Susan asked the elderly owner what the cat's name was, and the owner said "Polly". Susan said, "that's great - did you name her that because she's polydactal?" The owner patted Susan's arm and said, "Dear, it's a cat, not a dinosaur".
for non-cat people: polydactal is the term for cats with extra toes.
Hugs to all...I'm not travelling next week so hopefully will get caught up with everyone!
Terre
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Terre,
Now that is a funny story!! OMG, laughed so hard, not a dinosaur! Cheers, Dee
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Hi everyone! I missed this thread again! Why does it keep falling off my favorites?? I just added it again. I'm behind reading your posts but I just wanted to acknowledge LindaE54 who asked about me a few days ago: They finally removed the drain from the surgical site from my hip replacement and the scar is healing well. I am still wearing an orthopedic brace which hopefully the doctor will order off on Monday when I see him. I get physical therapy at home twice a week and I am making progress. I hope to be able to walk without the walker just a cane in a few weeks and perhaps even without the cane in a few more weeks. I spent Christmas and New Year with my friend Alma from Mexico and we went to Disney's Magic Kingdom (I live in Orlando) on January 4th! So altogether I had a great time during the holidays. She is now back in Mexico and I will miss her a lot.
This thread is the first one I ever joined in BCO and I consider myself a bone mets gal at my core so I really hope it will stop disappearing from my favs. If I disappear again, someone please send me a pm reminding me to check on the thread.
Take care,
Aurora
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Anniemal, I am sorry you had to join us but welcome. I, too, was diagnosed while pregnant. It is favorable that they discovered it early with you . . . and that it is considered indolent. It sounds like your doctor will be monitoring you very closely for now, which is good. That way, you are ready to reassess treatment options if there are any changes in your circumstances. It is definitely scary to receive this diagnosis while pregnant, to say the least.
Hopefully, you won't need to do chemo but I do know many women who have done it while pregnant, starting from various stages of pregnancy, and all have healthy babies. I did one round of Taxotere myself. The one thing I noticed is that the dose given for Stage IV is so much milder than the early stage dose. Taxotere blasted me when I took it for early stage. I had a much harder time on it than AC. When I took it for Stage 4, I didn't have any side effects and neither did the baby. He continued to kick around happily in my belly all day like he had been doing up to that point and is a big, strong healthy 1-year old boy today, despite being born just under 33 weeks.
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