Bone Mets Thread
Comments
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Keetmom - probably the Xgeva. I had the same reaction the first time and now SEs are very minimal. Hydration before, during and after is important.
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Keetmom, you might try Claritin. I only had that happen once with Xgeva -- the time I asked to try the shot in my tummy vs. my arm -- and I also had horrible pain, especially in my legs, for a week. Some women use Claritin (not the D version -- just basic Claritin, and a generic drugstore equivalent is fine) -- and report good results.
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I take benadryl an hour b4 my Zometa infusions, and that helps too.
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off to emergency room. Must have re injured rotator cuff. No sleep. At all. Throbbing, stabbing pain and can't move arm at all.
This is all i need, dammit.
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Hi everyone. Have been reading but not feeling like posting. Think I'm having a lot of depression. The pain I've been having while walking is happening more often now to where it's hurting just around the house. Last night something popped real loud in my lower back...not hurting all that bad but made me wonder what the heck is going on. Had a pop in a rib this week too but no bad pain...keep telling myself if something broke it would hurt like heck. Get my fourth XGeva shot on wed and then pet scan the following week. That will tell me where I'm at. Thinking of you all a lot. Wish I could get into a better frame of mind
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Gracie--I had a pop in back recently, no real pain but broke a rib...:(--about 6 months before stage 4 diagnosis I felt a pop in lower back had a compression fracture that was found at diagnosis..hope it is nothing..
Deanna--does it really make a difference where the shot is given, I did mine in belly this month.
I am feeling better today, a bit of pain but not a ton.
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LITA!!! Wishing you the best!! WOW that must hurt! Hope to hear from you soon. Good luck, sweetie!
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boy I hope it's not broken bones!!!
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Lita - My prayers are following you to the emergency room. It's a tough recovery from a rotator cuff injury, but it seems like half my friends have torn or ripped rotator cuffs. That is fixable. But still not what you needed. How did this happen?
Gracie - I am glad you checked in. I would seriously consider anti-depressants. The pain also needs to managed. Actually that alone can cause depression. Have you looked into professional palliative care? BestBird's guide has good information on that. There is nothing more important than moving but being in pain will bring any efforts to exercise to a full stop. Pain also reeks havock with our mental state.
Half the battle is staying in the game mentally. It simply gets to be too much with all the aches and pains and the endless scanning and scan anxiety and, of course, periodic bad news and treatment changes. The problem is that when you get into the downward spiral of pain and depression, it becomes hard to fight for care. And these are, needless to say, some of the hardest issues to treat.
I hope you have great scans and the weird popping is just some oddity. But if not, remember that a bad scan is just a signal to move to a different treatment, and one that may work well for a long time.
Keetmom - Glad things are better. Hope you continue to improve.
>Z<
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Lita, I hope you are feeling better..
God Bless,
Ronnie
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Z...I can't take anti depressants. I tried one when I had my hysterectomy and got suicidal...so they won't put me on them. Ive never been like that before or since...so no anti-depressants for me. Pain is going to be an issue...I kind of knew that already. I don't do well at all with ibuprofen...it just tears my gut to pieces. And Lortab makes me feel like I forget to breathe. So...Tylenol...and reduced amounts of lortab. I'll have to talk to my onc about tgat
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Gracie -
I think that if you focus on managing the pain, the depression will lift. Chronic pain messes with your head and there is a cascade of other negative consequences.
Oncologists may not be the most knowledgeable about pain. I would ask for a referral to a palliative care specialist. Here is the relevant paragraph from BestBird's MBC Guide on Palliative Care. Palliative Care is not hospice. It's about managing QOL issues for people with serious illnesses. Your doctor may or may not be familiar with the speciality, so you need to be educated coming in.
Palliative care can reduce symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. It addresses the whole person and helps them to carry on with daily life. It can improve one's ability to go through medical treatments and help the patient to better understand their condition and choices for medical care. In short, it enhances the patient's Quality Of Life (QOL).
Most insurance plans, including Medicare and Medicaid, cover all or part of palliative care treatment. Palliative care is generally available in a number of places including hospitals, outpatient clinics, long-term-care facilities, hospices, or home. Usually a team of specialists, including palliative care doctors, nurses and social workers, provide this type of care in conjunction with the patient's doctor. Massage therapists, pharmacists, nutritionists and others might also be part of the team. To obtain palliative care in order to manage cancer or treatment side effects, the patient should speak with her or his doctor or nurse. Alternatively, patients can look up Palliative Care providers in their area at: http://getpalliativecare.org/providers/
I am very concerned about you as is everyone else here. Please check in and let us know how you are doing, what is working and what is not working.
One thing to consider while you can't walk for exercise is a water movement class. Something not weight bearing. It's very important to move because certain basic body functions depend on moving. You can sick very quickly not moving.
Good to hear from you. Looking forward to your next post.
>Z<
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Z, will check into pallative care with my cancer center. I know they hvae something, I've just never found out what it is. Thanks for your concern, it means the world to know there are others who get it
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Gracie,
Good advice from the folks here. Palliative care can be very helpful. We care! Let us know how you are doing.
Lita! Good grief, Hope you get some relief and can carry on without more pain
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keetmom-hope the Xgeva SE's continue to diminish and then it builds bone big time...
Lita- NO! NO! AND NO! Prayers for relief of this pain quickly...sooo undeserved...
gracie-How can any of us avoid periods of depression with this damnable disease? It stinks when you go down that dark tunnel. I had a non displaced rib fracture at diagnosis, and it really smarted. Hopefully you don't have that going on. I experienced quite a bit more pain than usual end of NOV thru mid FEB, and my Feb 17th PET scan said "STABLE". I sure HATE this roller coaster we all ride....I am holding you in the light
love and hugs MJH
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Just seeing this now, Lita. Praying they were able to relieve your pain. I'll be watching for an update.
Keetmom, we're probably each a bit different re. best location for Xgeva shot. Hope you find the one that works best for you.
Gracie, hoping the pop you heard wasn't as ominous as it sounded. Maybe something going on with a ligament?
I'm @ UCLA tonight. Scans in the a.m. (it's been 6 mos.). Onc appt in the afternoon. Feeling very apprehensive this time...
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Deanna - fingers cross for boring scans. Hope the radiologist falls asleep looking at them.
>Z<
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Gracie I know what you mean with the depression. It's such an awful spiral since my liver mets diagnosis I've been down as well. Had a good weekend though tried to ignore the worry for a bit because it just never ends. Sun came out and forced myself to get my but back in gear but I know what you're feeling. Try and stay busy if you can I find that helps me.
Deanna your scan will be boring and stable this is my wish for you. I know nothing will stop the worrying but you know it changes nothing only makes you feel nervous and crappy so watch a bunch of movies or whatever can get your mind on other things. I'm one to talk lol I'm always climbing the walls after scans.
Z how are you doing lately ? You are always so caring and sweet in your replies it is noticed😊
So I have my next scan appointment in March coming up as well , still realing from the last one. This time they want to include my head. When I asked my onc she played it down . "Your type of cancer rarely goes to the head but I just want a total scan so we can document it". I call a big BS on this lame excuse . She thinks I may have brain mets I have no idea why. So really something to worry about. Just when you think you can't handle anymore ...more happens.
Lita I'm crossing fingers and toes that all turns out well with you. Sometimes things just suck. You will get through this as well
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Gracie/Wendy - I'm just starting to get out of this depression triggered with my latest progression. Still in the process of digesting but getting better. Staying busy and booked some art classes to keep my mind from going to dark places.
Wendy - your MO is thorough but it's nerve wracking. Your brain scan will be boring.
Lita - waiting to hear from you and hoping all is well.
Deanna - I will be on the look out for your results. With you in spirit today.
We need some good news on this thread. Anyone with good news, please step up and bring some joy to this thread.
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Hi everyone,
I am sorry to hear about all the bad news and the anxiety about results that are expected. I am following Linda's suggestion and posting my latest news because I think it is good. I don't have scan results, but I do have test results. I had to take a two week break from Ibrance this month so my counts would be high enough for me to have a surgical procedure to have a kidney stent put in. (Kidney issue is not related to cancer.) That is not the good news yet. I have taken two week breaks before, but this time my blood test results were incredible compared to past results. Even my MO was amazed. My neutrophils were up to 1800. 1800!!!! They have never been higher than 1200 even after a two week break. My hemoglobin was 11.5. It hasn't been that high since diagnosis when it was only 7.1. It had reached 11 right before I started Ibrance and had been going down a bit every month since. It was 10 last month. I wondered if they had the wrong results, but no, they were mine. I could tell by the rising creatinine. The WBC and RBC are still a bit low but not bad at all. So, does that mean my bone marrow is finally adjusting to Ibrance? I have decided to believe that it is.My counts seem to be bouncing back more quickly. I feel better than I have for two years. The timing was perfect. My DH and I leave for a two week trip to Florida on Wednesday.
I hope others have even better news to post.
Hugs from, Lynne
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Linda, you were asking for good news so here goes. After 5 months of horrid chemo that stripped quite a lot out of me I had my first ct scan a couple of weeks ago. It showed only sclerotic lesions, these will never go as they are scars in the bone. I have no active lesions so I'm in remission. I have started on tamoxifen with virtually no side effects and am starting on Denosumab for six months on Friday. Then six months off and back on for 6 months. This helps prevent necrotic jaw apparently. The plan is to see the oncologist every 3 months with a scan prior to every other visit.
My hair and eyelashes are growing back and I'm feeling so much better.
I have no idea how long the rollercoaster will remain up in the air but I'm really enjoying it at the moment. We've just come home from a skiing trip in Austria and it was lovely.
To all you ladies not having such a great time I send you my love and hugs xx
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Vevs, WOOHOO! Congratulations on your scan results and for having no active lesions. That is not just good news, it is FANTASTIC news. I am doing a happy dance for you. I hope you soar on the heights of that roller coaster for a long, long time.Another WOOHOO to you.
Lynne
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Vevs wow that's great news , love it.
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Vevs - I AM SO THRILLED. Yeah BABY, Yeah.
Wendy - I am so glad to hear from you. Your facebook posts are full of humor and wisdom lately, so I knew you were basically okay. The March scans will be interesting ... are you on any treatment, complementary or otherwise?
I am very pleased that your doctor is thorough. You just had progression, so it is time to check the brain. Sounds logical to me. Nothing more than that.
FWIW, they always scan my brain. I would be concerned if they did not. But, absent symptoms, once a year would probably do the trick.
Lynne - Those high neutrophil counts are going to help you across the board, and in dealing with the kidney procedure. The news couldn't be better. Do you have any theories? My counts went up in January concurrent with starting horse doses of Turkey Tail, but it could have been random or something else. It sounds like you think it just your neutrophils evolving to deal with the Ibrance. If the bad cells can, why not the good ones?
I am getting over a rough couple of weeks. Nausea, severe headache, exhaustion. Yesterday was my first run in 9 days. The problem with not getting regular cardio is that my side effects snowball. I got the Ibrance Burning Scalp and the Ibrance Weird Rash. But I pulled of 2 miles yesterday and the SE's are calming down. Overall improving day by day.
Gracie - check in! We care about you!
>Z<
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Thank you, thank you, thank you. When I was first diagnosed with bone mets my world collapsed and I thought that my life as it was was gone forever. I joined this fantastic thread when I was at my lowest. Through it I have been nurtured and supported and most importantly been given hope in a sea of hopelessness. I'm not very active but I read the thread regularly and even when the news is not good I am always amazed at the support and love that pours from others. I have also met two Welsh ladies from the site and I'm meeting one for coffee tomorrow morning...how fab is that?!!
Big massive thank you to you all xxx
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Hey Lynne that's just fantastic! Hope the scans will follow with great news. When are you having the stent put in. I know an elderly man that had it done recently, and he is doing great, in spite of having pancreatic/liver cancer. This really was a change for him
Vevs that sounds awesome. What a nice trip. Coffee meet, fab!!
Gracie you do need someone to look after you as a whole person too. Take good care.
Lita, what's up dear?
Wendy, I could tell you that it's great to have a baseline for the brain. So is this gonna be a Pet/Ct? That is good to detect bone mets, but to see what's really going on in the skull D's RO recommends Brain MRI, which is not just the brain but the calvarial bones, the works. I don't know what the costume is where you live. It shall be unimpressive, as many docs like to say.
Zar reading what you do, the exercise bit, got me pushing Dani to do more also, I used to think that being she had so much extensive bone mets, and being so fragile, she would break, but since getting on board with you, I encourage her. Onco doesn't say a thing about these things. Thx. Hope you are feeling better. Why do you think you had this not feeling good time? The virus from awhile ago?
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Hey Lynne that's just fantastic! Hope the scans will follow with great news. When are you having the stent put in. I know an elderly man that had it done recently, and he is doing great, in spite of having pancreatic/liver cancer. This really was a change for him
Vevs that sounds awesome. What a nice trip. Coffee meet, fab!!
Gracie you do need someone to look after you as a whole person too. Take good care.
Lita, what's up dear?
Wendy, I could tell you that it's great to have a baseline for the brain. So is this gonna be a Pet/Ct? That is good to detect bone mets, but to see what's really going on in the skull D's RO recommends Brain MRI, which is not just the brain but the calvarial bones, the works. I don't know what the costume is where you live. It shall be unimpressive, as many docs like to say.
Zar reading what you do, the exercise bit, got me pushing Dani to do more also, I used to think that being she had so much extensive bone mets, and being so fragile, she would break, but since getting on board with you, I encourage her. Onco doesn't say a thing about these things. Thx. Hope you are feeling better. Why do you think you had this not feeling good time? The virus from awhile ago?
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Mom - I thought it was the third week of Ibrance, but then the symptoms continued and got worse through my week off. I was changing up supplements which I think contributed. The problem with all these symptoms is that with all the meds, the cancer and possible infection I can never know for sure what is or was the cause. But I think one layer of it was a stomach bug. Stomach is still sensitive.
Moderate exercise makes a huge difference but with bone mets, I would stick with moderate. A brisk walk, an aquatic exercise class. She should not challenge her range of movement. Yoga, for example, may not be place to start. We have too many strange pops on this thread as it is.
Vevs - your life as it was is probably gone for ever, but this one is not too bad. Especially when you are NED!!!!!! Yeah. Yeah. Yeah.
>Z<
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Hi Momallthetime, it is always good to hear from you. I had the stent put in last Tuesday, and I am doing well. It is just temporary until I can have surgery to correct a partial blockage. Since I only have one kidney and the blockage is getting worse, my urologist wanted to do the corrective surgery right away, but since I already had a trip planned, and my husband has surgery of his own scheduled when we return, my urologist decided to go with the stent until surgery. Surgery will probably be in late April.
Z, I did nothing different last month. My eating habits remained the same. My exercise schedule was unchanged. It was a stressful month, but I would think that would have a negative effect, if anything. The only change is that I did not have a Zometa infusion because the frequency has changed from monthly to every three months. I seriously doubt that Zometa would have any impact since my counts never plummeted before Ibrance. One thing that I have noticed is that SEs from Ibrance can be inconsistent to say the least. Some months my energy is low. Some months I have nausea but feel better if I eat. Some months I have headaches. One month I had a very itchy rash on my hands. Some months I have mouth sores. I could go on, but you get the point. It will be interesting to see next month's results.
Deanna, let us know the results of your scans. I hope they are great. I get more nervous about scans now than I used to. No explanation for that.
Wendy, I agree with Deanna, your MO is just being thorough. It is human nature for us to read into things, of course. I will keep my fingers crossed for good scans.
Lynne
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With the little I know, Lynne, It looks like it was a good call. At least you know you are being covered. Neutrophils of 1800 what does that mean? D's BT is range from 45.0-75.0 - ANC 1.8-7.0 and normal is somewhere in between, well 2 wks ago ANC was 0.0, crazy stuff. So I am trying to understand your #.
Hubby having to have surgery again?
Zar trust me she is not doing a thing above moderate
she has tons of lumbar, pelvic and thorathic mets so it kinda guides her. If she just walks on the treadmill I am happy. Don't hate me, but would you do a sono or something to figure out your stomach issues? Aghh I hate to mention it, but you've been so good with taking care of yourself and the supplements, so what gives? Maybe what you need is some Cancun in you!
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