Bone Mets Thread
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Quite a few people have PM'd me about the reaction I had to Xgeva, so I will post here. I only had one injection in late October. I immediately had acid reflux but that was manageable with Prilosec. About 6 days post shot, my knee started to swell and I have had significant pain since. Hard to walk. and joint is still swollen. Again..manageable with ice etc. with intermittent severe shooting pain in the joint. Then on my 10th day out, I started to get strong to severe back muscle pain which radiated across my back down my hip and my back muscles spasmed almost constantly. The pain level was a 10. The pain intensified and I was unable to walk or put any weight on my leg. I had to use my walker to navigate at all. That intense pain continued for about a week and then finally started to abate. Now it is not as significant. Swelling is down, and pain is a 3. I called my onc of course and called Amgen, the maker of Xgeva. They said yes I was experiencing a severe musculoskeletal adverse reaction to Xgeva. When I asked if other patients had reported this, they said yes especially post marketing. I then talked to my BIL who was acting FDA director in 2000-2003 and he confirmed that I was indeed having a severe reaction and reported my reaction to the FDA. Today I'm still having some knee joint pain and back pain but it is lessening. I hesitated to post this because I don't want to deter someone from taking it. Others have been on Xgeva and are doing well. I am an exception. My onc told me yesterday that other patients have had similar reaction, but not like mine. Sorry this is so long. Please feel free to PM me if you have more questions. Even though Amgen of course wants to continue to market the drug, they encouraged me to report adverse reactions to the FDA so post marketing percentages can be made. The researcher/pharmacist I spoke to was quite compassionate. You can also go on Xgeva.com and click on Prescribing information. Scroll down to page 8, bullet 6.2 for Postmarketing Experience.
On a lighter note, I hope you all are having a good weekend. Anybody have some more photos they can share with us? I think we all could use a smile or two. My best to all.......
Linda
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3Holly- I use Xanex for sleep- If I can't get to sleep I take it and if I get to sleep on my own, and wake up later on, I have it right by me to take and it works. There is nothing worse than insomnia.
Question: Rads to my pelvis have my stomach in turmoil. It didn't start to after the 6th round. I have 14 to this area at a low dose and I only have 3 left -- thankfully I have today and tomorrow off.
Did anyone go through this? Cramping in stomach is terrible. Only a bit bowl trouble but cramps the worst. Anything I can do to help??
If that isn't bad enough something also happened to my leg where the rod is. They think that maybe the tendons in my leg wrapped around it some and I can hardly walk. Either that or I have a hair line crack but I think it's the tendons because if hairline crack they said it would get worse.
Do we ever catch a break ?? EVER?? Sigh...
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I am miserable too, much like you LovesMaltese, although I think I would rather have this than stomach cramps and GI issues. I am so sorry you are going through that.
I posted this on the radiation thread, but I thought I would also post here, since its really for us bone metsters. I had CyberKnife treatment to c7 spine two weeks ago. I was misled into thinking there would be no collateral tissue damage. My throat is SO sore, it hurts to swallow, and I can't eat (without pain). Dr. put me on some pain and coating meds, but there seems to be no let up. Does anyone here have experience with this? I am wondering how long I'm going to suffer before I start getting some relief. I am looking for that break. Seems to me like its been one thing after the other lately. Cant remember the last time I felt good. ☹️
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Hi, just wanted to add that I don't do real well on steroids either. My Dr. cut the dose in half and I take them at lunch. It's helped so much, no more jitters or insomnia. Feel well everyone. XO
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Once again, I'm way behind in reading, but promise to catch up later today.
In the meantime, something has been on my mind that was mentioned a page or two back when discussing hair loss. Saucychic -- you said you're taking biotin. You may want to do some research on that. Others on BCO -- maybe on one of the complementary or alternative threads? -- have in the past questioned the safety of taking extra biotin when we have bc. The "logic" is ... chemo attacks our hair & nails, because it's going after fast-growing cells. If we do something to promote the growth of fast-growing cells (e.g. take biotin), are we possibly also promoting the growth of cancer cells, which are also fast-growing? Far from a scientific question or explanation, but reading that sometime in the past certainly made me stop using a biotin supplement, and I thought it was worth sharing so that you or anyone else can evaluate it for yourself.
Love the photos, Dee & BlueFrog! More later when I can catch up...
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Deanna, very good question. I am taking biotin. So after reading your post, I did a quick research just now and found the following might be informative (http://www.islandpacket.com/news/health-care/profe...):
Emily Bowman, a clinical pharmacist at Beaufort Memorial Hospital, discusses the use of biotin and other vitamins.
Question. I took biotin regularly for a while, but I wasn't noticing a lot of benefits for my skin, hair and nails. They certainly didn't seem to be growing faster or stronger. But, now that I've stopped taking it, I'm noticing a lot more hair falling out when I brush it. Was it working and I just didn't realize it? Do some vitamins and supplements have hidden benefits? If so, how do we know if it is working?
Answer. Vitamins and supplements often boast many claims, such as improved energy, weight loss or immune system support, but you can't always take their labels at face value. How do we know if we need these supplements or if they are actually working?
Let's use biotin as an example. It touts many health benefits, but its most notable claim is its ability to promote fuller, thicker, longer hair and improve the quality of skin and nails. First, a little background is needed. Biotin, also known as vitamin H or vitamin B7, is a member of the B vitamin family. All B vitamins are responsible for helping the body metabolize fats and proteins to produce energy.
Only a small amount of biotin is needed daily, and biotin deficiency is rare. Symptoms of biotin deficiency are nonspecific, but may include a change in cognition, muscle weakness, nausea, hair loss or thinning, or scaly rough skin.
Most people ingest enough biotin through their diet that supplementation is not necessary. In fact, there is no recommended daily allowance of biotin in the United States. Advocates of biotin use recommend 5000 mcg of supplemental biotin daily. Yet, this dose has not been studied, and its safety is not known.
Biotin is found in eggs, especially egg yolk; sardines; nuts, including almonds, peanuts, pecans and walnuts; soybeans; whole grains; cauliflower and bananas. Raw egg whites contain a protein, avidin, that can decrease the body's absorption of biotin, but that is only a factor if one consumes a large amount of raw egg whites. Bacteria in our own intestines also naturally produce biotin.
There is only very weak evidence to suggest that biotin supplementation results in improvements to hair skin or nails. Biotin supplementation in those who are not biotin deficient has not been shown to improve hair health. A few studies do show that biotin supplementation in combination with other supplements (niacin and saw palmetto) may promote hair growth. This was shown only in men who already had clinical alopecia. Also, the National Institutes of Health say there is not enough evidence to recommend biotin use for hair loss.
Vitamins and supplements may have a place in our diet. Their primary function should be to fill in small nutrient gaps. They are intended to be used in addition to a well-rounded diet. If you are experiencing adverse effects from vitamin use or discontinuation, it may be time to schedule an appointment with your doctor. Always consult your pharmacist or physician before taking any vitamins or herbal supplements.
Well?
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Lindalou trying to attach a photo for you. I am a little afraid I will end up posting ten photos instead of the one. Anyway hope you are feeling better and your treatment team finds some answers.
Feeling for those who are miserable stefjoy and lovesmaltes.
Here's my 3rd attempt at attaching a picture of my daughter who had an inner beauty pageant with a group of middle school girls. She is miss outspoken
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3-16Nice pic of your daughter!!
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Mary, so cute of your daughter! Love her title.
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Deanna & Xavo, thanks for the info on biotin. Very timely for me as I was considering taking it, but was still doing research on dosages, so haven't bought any. Now, I'm reconsidering and guess I just need to be patient for my nails and hair to recover!
3-16, very cute picture of your daughter and love her title.
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Great photo Mary!
Loves - tummy issues with radiation is normal. A small piece of dark chocolate may help. Let your RO know. It does abate about a week after the rads are done.
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3-16, Thanks for sharing the picture of your daughter. Great title too. I hope ill find a picture of my bike soon. I rode mostly alone, and it was pre-selfie days. I sure hope I have pictures. Yours looks great. That's how I packed for an overnighter, sort of. What's the body of water next to you?
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Biotin can cause skin breakouts, too. It does for me.
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Lovesmaltese,
Your stomach should be back to normal within 2 weeks after rads. Rads upset mine for that long but did get rid of the bone pain.
Terri
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Lovesmaltese, I agree with ibcmets, - had stomach upset with rads to lower lumbar spine a year and a half ago, but it went away after 2 weeks, so hopefully you will have relief soon, and hope your pain eases soon as well.
Stefajoy, I had slight throat soreness from my recent upper spine radiation, but it went away fairly quickly, so hopefully yours (though it sounds much worse) will also subside soon.
Thanks everyone for all the great advice, and have a wonderful day!
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I'm experiencing stomach and swallowing issues which isn't all bad since I'm down about 12 pounds. The most bothersome SE I'm experiencing is spasms to my esophagus which has caused painful hiccups and a weird sensation like someone has their fist in the middle of my back, painful pressure.
My RO called to see how I'm doing after my 9th treatment then prescribed magic mouthwash to drink. I've only used it twice so can't tell if it's working yet.
Just wondering if anyone else is in the same boat?
Amy
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Hi everyone, I am still getting caught up on the posts. This thread is always busy, and that is a good thing since it means we can count on each other. I will add my 2 cents later. In the meantime, please enjoy your day.
My DH and I bought our Christmas tree the other day. I have attached some pictures of my grandson, granddaughter, and my verypregnant DIL who accompanied us. My grandson goes with us every year and now is responsible for picking just the right tree. The pix are not good, but blame the photographer. I forgot to turn on the flash. I will blame estrogen-deprivation.
Lynne
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Lynne loved the pics!! Put a big smile on my face.
I'm showered, dressed, and out of bed! Today is a bit better than yesterday. I wonder if the xgeva shot along with a week of rads had me down and out. I only have 3 rads left. Only to my pelvis but the stomach cramps ugh.
I can't wAit to be normal.
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Amy sorry you are having issues to with rads. I have a burning feeling in my back rib area. Not pain but Advil helps whatever it is. I pray it's a healing met.
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Good morning ladies: all these pictures are wonderful to see. Such a wonderful break from Mbc SEs and sadness. Myra.
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I've been reading posts while at cancer center past week or so but had difficult time posting.
M progression of disease is bone marrow mets: about 50% of my marrow has been replaced by sclerotic bone lesions. All in my sacrum/pelvis. Hmmph! Bone mets are the crazy mets and I'm the proof. I can't produce enough blood components to keep me going w/o extraneous sources so I'm getting blood and platelet transfusions regularly. No more hormonal therapy or clinical trial. I have graduated to chemo, but at least it's oral Xeloda. Madame X. Myra1211 & 3Holly I'm joining you. I've been to the Xeloda board for guidance. Took my 3Rd dose today, nausea and mild H/A so far that's the extent of s/e. I'm on 7 days off 7 days at 2000mg twice a day.
Dune: I've been getting platelet transfusions and packed red cell transfusions for about 2 months due to bone marrow mets. I'm always premedicated with Benadryl, Tylenol before both. They also have steroids available for me. (Steroids make me absolutely crazy) My PLTS have gone as low as 10,000. Usually wait for plts to get closer to 10,000 before transfusion. Spontaneous bleeds usually don't occur until plts get lower than 10,000.When my hemoglobin gets in the 7's I get really short of breath, fatigue to point of falling asleep mid sentence, then I get blood transfusioN. Hope u don't need PLTs regularly and u never need packed red cells. Is your medication the cause of low platelets?
Patty - u r amazing. Hope u get out of Hosp and home ASAP.
Iwrite - hysterical! My bro lives in Boulder, CO. I need to visit. Edibles sound like a good choice for me. 😉
AmyQ - my ONC has recommended handicapped placard too. Not only am I a fall risk, but when my hemoglobin is low, I get so SOB when walking...... I'm gonna give in.
LindaE - what can I say? Anaphylaxis from dye sucks. being "coded" must have been frightful. You have had your 3 bad things in a row. Hope u r on the lucky path now.
Bluefrog - ur kids r adorable. I go to fox chase in PHL. I live at the So Jersey shore. Glad u found this board, if u have MBC this is a wonderful source of comraderie and information and support.
Lovesmalt - I too had rads : to 3 fields of my sacrum. Had some gi upset and diarrhea that dissipated after treatment stopped but took about 2 weeks. I had 10 rad treatments.
3holly - I roll to my side on scan table then techs very carefully and slowly help me up.
I'm sure I missed a comment I waned to make please forgive me. I pray daily for all of you and I'm so grateful for ur support. 💪💪
Thank you ladies for being here. It makes this "METAvivor Lifer" journey more bearable. Calms my fears. Helps me feel less alone. Makes me cry. Makes me laugh (Iwrite esp) I am less afraid of the future cause someone is here to help me cope. You listen.
Hugs, love and light to all.
Beth
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Beth, I am always thinking of you! Hugs... and I pray the new treatment kicks this to the curb for you.
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Happy Hanukkah to everyone who celebrates. I wish you peace, joy, love, and happiness during this holiday season and throughout the year
Lynne
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Beth, so far the Xeloda has been fine after 5 days. I am 14 on/7 off. I wonder how they choose which tx you get. I have found a nice cup of chamomile tea helps with the slight nausea. Had some wicked headaches though.
Lindalou, I live in Ft Lauderdale, FL Which brings me to a request. Lately many women posting have been leaving off their diagnosis and treatment. It makes it very difficult to answer some of the questions asked. Please see if you can correct that. Thank you.
Have a wonderful day. Myra.
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Myra, I am so happy to hear you are doing well with the new treatment. I hope the headaches get better and the Xeloda takes you to NED really fast.
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That was perfectly said Lynne! Happy Hanukkah to everyone that is celebrating!
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Thanks, Myra, for your request about showing our treatment history in our signatures. I had not noticed that mine was hidden, so I went into Settings and made it public. HTH!
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50's girl,
Thank you for the Hanukkah good wishes. Having my family over for roast chicken and latkes tonight and then two more Hannukah gatherings at others homes next weekend. However, I have to go over to my classroom now to get ready for the week. Anyone who thinks teachers stop working when school is out is very wrong! My class is participating in Hour of Code this week, which is very exciting. Coding in first grade? You bet! My students love it
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Yes, Happy Hanukkah to our Jewish friends. We used to celebrate Christmas and Hanukkah when our kids were younger but now they've flown the coup so my husband has settled into helping me celebrate Christmas.
Enjoy!
Amy
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Happy Hanukkah! Wishing for a lovely day for all.
Off to Auckland tomorrow for the rest of the week...
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