Bone Mets Thread
I've started this thread after suggestions that it would be useful.
Mod Note: We have removed the original link as it is no longer viable. At one of our member's' recommendation we are offering this link as a resource for you.
Comments
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jac53,
Was that a blood test that showed high calcium? My recent Vit D was really high so doctor told me that wasn't good and to stop taking it because it caused high calcium levels. But he doesn't have a calcium number for me.
Naniam,
Does your doctor test your calcium, potassium and sodium levels with blood test? I know my oncologist wouldn't do this. I could probably have my ND to it. Is there a connnection with low calcium, potassium, sodium and cancer? Is that what causes bone pain?
This reminds me of the question on a Gerson thread...why do they eat potatoes b/c I thought they were "white" and starchy. But I think potatoes have a lot of potassium and sodium so I wonder if that is why Gerson has that as part of their cancer treatment?
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Ok right here right now I confess I cannot wait till night to take my next painkiller, sisters. My back hurts so much today, it is Contramal time!
Smiley2, my cancer dietitian (?) too put potatoes on my diet.
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Hi stagefree. You go for it. Painkillers rock.
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Smiley2: My onc requested the calcium level in a routine blood test. I can't find my results here at home as I'm in the middle of a move.
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I have extensive bone mets for 6 years and my sodium level has been consistently low or borderline. I've had minimal to tolerable bone pain for the last 6 yrs. until the last month or so. This new, terrible pain is in my left shin area. Can't figure why other than new mets or bone pain due to Aromasin which I started 5 months ago. Had clear ultra sound and xray. I see Onc. tomorrow and am due for my 6 month Pet/Ct but will request whole body scan rather than usual scan which ends at mid thigh. Hoping it's se's rather than more mets!! Bev
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Bev I have heard that the mets rarely go below the knee so here's hoping it's just a SE.
Love n hugs. Chrissy0 -
Thanks Chrissy, I heard that too. Here's hoping!! Bev
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meima-bev: Have you had your bone scan/results?
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Jac53, thanks for asking. Saw Onc. yesterday. She is ordering a ct scan with contrast of leg. She feels leg pain is probably a se of Aromasin. If scan is negative (hopefully), then will consider going off aromasin and back to femara, which worked in past, but stopped due to horrible side effects. Hoping for clear scan, then I have choice of being in pain from aromasin or sick from femara. I've been doing this almost 6 yrs. now and since it's still confined to bones want to save other treatments (i.e.faslodex or chemo) till I have to. Bev
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Good luck for the results Bev & thanks for giving your news!
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I just found this site. This month will mark 5 years since I had my mastecomy. But, I do have bc that spread to the bone. I also had surgery for a spinal tumor in Dec. 2006. I also had 3 Cyberknife treatments in Jan. of 2007for my back. I was on Femera and was getting monthly infusions of Zometa. Had to stop the ZOmeta because of jaw bone deterioration, which is a se of the ZOmeta. It seems all of those kinds of drugs have this se. I had been getting MRI's, CAT scans, PET scan regularly as they were watching a place in my spine. After a PET scan in Dec. there was a slight change in this area. My oncologist took me off of the Femara and put me on Aromisin. I had had no problems with the Femara, but have had some slight se, which I am attributing to the Aromisin. Trouble with my legs and tireness. After blood work last Friday, the cancer center nurse called and said there was a raise in my calcium level. I am going tomorrow for a one-time infusion of the Zometa. I also had PET scan last Friday, also, and have an appt. with the oncologist next Tues. I am wondering what has caused the calcium level to rise. I have not had any problems for the past 5 years, except have to use a walker from the problems I had with my spine. But, I have felt great this whole time and able to lead a pretty normal life. I am 78. I don't have any pains at all. I am trying not to worry but am wondering if anyone has had this problem and what. All of the postings I have read above are very encouraging. Thanks.
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Hi Joy and welcome to BCO and this thread.
When you have a rise of calcium levels in the blood stream it is often a sign of active bone mets or a vitamin D3 deficiency. Another cause can be related to the thyroid.
Have you ever had your D3 checked? It is just a blood test but it is important as you have bone mets (so do I by the way). If your D3 is low, it can also explain your calcium being high as it is the D3 and magnesium in your blood stream that helps the body put the calcium from your blood back into your bones rather than excreting it out through your kidneys or causing kidney or gall stones.
I'm glad you are and have been feeling so well through out your journey with BC and I hope it stays that way for a long while to come.
Love n hugs. Chrissy
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Thanks, Chrissy. I get regular blood tests, but would that be a separate one from just the routine ones. I will mention it tomorrow when I go for the infusion. The blood work I had done in May was the best it has ever been. So, this really has me puzzled. Unless, which is what I am thinking, the place in my spine is what is causing it and the new med, Aromisin, isn't helping. The orthopedic oncologist did tell me that I could have more of the Cyberknife treatments. The blood work for the tumor markers was better than it has ever been. When I was first diagnosed back in 2006, those numbers were very high up in the 100's. It is down to 41 now, and the normal is 38. In February, when I saw the orthopedic dr, he was the one who mentioned about this place they have been keeping an eye on in my spine. And, he preceded to tell me not to worry about it and the medical oncologist had told me not to lose any sleep over it. That I was more worried about it than they were. Easy for them to say. So, that is another reason why I am puzzled now after everything being pretty good in May.
I see where you are a long-time survivor..... nearly 9 years. That is wonderful and hope that you feel good. And continue to do well. Thanks again for your encouraging needs.
Hugs back to you, too. Joy
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Bev,
I have bone mets since the start 3 years ago. Since around Arpil I've had pain in the L knee and down my calf and back of knee. Had to go to orthopedic Dr. Did MRI and found moderate arthritis. I'm going to get a shot of Synvisc in the knee this week. It's supposed to last 6 months.
Onc will request full Pet scan this month. I get them every 6 months, but usually only till mid-thigh.
Hope you can get rid of your pain soon.
Terri
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Joy, it's good to see your markers dropping so well. At 41 you are almost back to normal and if the pain in your leg was due to mets they would be rising so I'm pretty sure you are looking at either arthritis or perhaps a bit of nerve damage from the mets in your spine.
I have very bad arthritis and had a total knee replacement done 12 weeks ago so the other leg has been taking all the work to keep me getting around. That knee also needs to be replaced and I have been having shin pain as well but I'm sure that is transfered from the knee.
Apart from fatigue I am doing very well and am only on Femara and have been for 21 months but it seems to be doing its job and keeping me stable. Here's hoping the Aromasin does it for you.
Love n hugs. Chrissy
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Is cyberknife treatment the type of radiation treatment that is now more exact at cancer location? Meaning it will just kill cancer cells and not healthy cells around the cancer?
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Smiley that is my understanding of cyberknife.
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Smiley2, yes, that pretty much explains the cyberknife treatment. It is really nothing to it. They made a mesh form to fit my back and I laid on that on a table and this big machine just goes around you. Took about an hour each time. Nothing to do to prepare for it and you get up and go on about your way. I had an infusion yesterday of Zometa, which is supposed to have been a one-time shot. I was on Zometa for almost 5 years, but had to get off of it because of jaw bone deterioration. I did find out that the calcium level in the blood was 11.5, with the highest reference range 10.6. I was expecting it to be a lot higher. But, I did find out that my tumor marker numbers have gone up, so that tells me that something is going on. I will see the oncologist on Tues. so will find out whatever is happening. My orthopedic oncologist had mentioned that I could have more cyberknife treatments. I asked the nurse yesterday how long it takes to see any changes from the one-time Zometa and she just told me that the doctor will go over everything when I see him on Tues. After reading a lot of the postings here, I am expecting to hear that there are more mets showing up somewhere else. Up to now, it has just been one place in my spine that they have been watching. I am just hoping that with all this new health care stuff, that I won't be told that I am too old to warrant more extensive treatment. LOL. I have heard rumors about the new Obamacare stuff, that poor grandma is not important enough to be treated. Hopefully, that won't be the case. I am just going to try and be patient and try not to think the worst before next Tues. Sometimes, after reading all about other's conditions, I feel guilty about feeling as good as I do.
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Joy,
You mentioned a one time shot of zometa but that is through IV. Did you mean Xgeva? You mention being on Zometa for almost 5 years and developing jaw bone deterioration. I have been on it about 3 1/2 years. What are the symptoms of jaw bone detioration or did your dentist notice it in routine exam/cleaning?
Do you have a scan scheduled to see if there are more mets? Hope your appt goes well next week! don't worry until there is something to worry about, right?
Easier said than done!0 -
Smiley, I guess I phrased it wrong, when I said a one-time shot. That was how the nurse put it. No, it was Zometa, and it was through an IV. The jaw bone deterioration showed up on a PET scan. I just happened to have a dental appt. a couple days after I was at the dr. and told the dentist and he did a full head x-ray. And, it showed up very plain there. They were going to put me on Xgeva after I went off the Zometa, but that has the same side effects of the Zometa. All of the bone strengthing drugs....Boniva, Fosamax, Reclast........ all have that same side effect. My dentist told me that most of these drugs now have been on the market about 5 years and now people are showing up with this problem. He told me he has 5 patients that he is treating for it. You know, we are all guinea pigs when it comes down to all these drugs they put in us. He probed around in my lower gum and then injected something. I go back every couple months and last time, he said it was just about cleared up. I was getting little slivers of bone that worked their way out of my gum after I had the treatment from the dentist. I had no other kinds of symptoms from it. No pain or any other signs. Even when the dentist was digging around in the gum, I didn't feel anything. It is supposed to be a very rare thing to happen. I will have to wait until I see the dr. and find out the next step.
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Joy78. I agree that we are all guinie pigs. I sometimes just want to say F*** It (excuse my language) and just stop all drugs! I don't want to go out feeling like I am truly dead even before i am really dead if that makes sense! Considering that conventional treatment fails, you would think that more oncologists and even patients would be open to alternative therapy. What is the difference really other than the alternative treatments are less toxic!
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Bump
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ONJ is rare but that doesn't diminish the seriousness if it happens to you. I'm not quite on board with the guinea pig analogy. We are eager to have the FDA approve drugs that appear to be working and often feel, if there is strong evidence of efficacy, that it should be fast tracked. However in doing so, we have little to no evidence of the longer term consequences of it's use. Alternative tx may be less toxic, in some cases, but not all. Natural or alternative doesn't mean harmless. We all have to weigh pros and cons of our tx and remember how individual our experiences can be. I am om Arimidex and Aredia and have had no problems. My mo plans to stop the Aredia after 12 months. Currently at 8 months. I exercise regularly and take supplements as well, which are great complements to my conventional tx. Caryn
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Bump
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Very grateful for this thread.
I've had mets along my spine for a while now, but just had mets to my skull diagnosed, along with a hot spot where my collarbone meets my sternum. I'm still waitiing for the doctors to decide what to do.
The thing is, the mets in my skull are lytic so they didn't show up on the bone scan, just on the CT. I had to educate my gp that lytic lesions don't show up on a bone scan to get him to talk to my onco for me. (She doesn't have any patient appointments open until October (yikes!), so he is handling the tests for this new progression in consultation with her.) The lytic lesions don't hurt, so it's pretty easy to slip into denial about the progression, but I don't think that is good for me.
Anyone else here have lytic lesions or skull mets? How are you feeling with that? It's freaking me out!
Also, does anyone know if it's really true that lytic lesions don't show up on bone scan? A friend who's an MD in a different field told me that, and it makes sense, but after talking to my gp, I'm curious.
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Claire,
I have both sclerotic & lytic all over my spine. Originally had MRI, bone & Pet scans to compare notes. Now I just have Pet scans done. I'm 3 years out on Zometa & Femara. I have joint pains at times and arthritis in my L knee, not sure if it's from the zometa or Femara.
Terri
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Claire I have had a skull met diagnosed in Feb '11. I had a big dose of targeted radiotherapy at the end of Feb '11 & it's not grown or shrunk since then. This met causes me no problems that I'm aware of. Best wishes for a speedy Onc appointment & results you want to hear. Hugs
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Bump
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What is the difference between sclerotic and lytic? Are they treated any differently? I have 4 mets and onc said one was a subtle lytic. Thanks. I also sort of wanted to revive the thread as I think it would be helpful to compare notes about bone mets. I've seen a few people on this site that I notice are living long and some NED and wonder about the different treatments. I'm on letrozole but don't know yet if its working or not. (Appt on 9-19). If it doesn't I wonder what will be next and what seems to be working best for others. Of course we are all different in our response but having the info all in one place would be great. If you lovely bone met girlies are inclined to participate, just post with a brief summary of your history of treatments. Or a long summary if you wish! Thank you all for your wonderful friendliness and support!
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hi all
i am a newbie; after 10 and half years stage IIIc, i ended up with a single bone met to T4. just found out august 30. i had no symptons; except my CA27.29 started to elevate last january and by august they had double rp 62 and a week later was 82. doc ordered a PET for restaging and there it was; one little spot. 1.5 cm.
plan is to biopsy it to check on HER2 status and other aspects and then radiation.
my main question is ; how do they biopsy this? is it a needle biopsy or open biopsy> any infor would be helpful. thankyou all*
diana 50
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Hi diana,
I would assume the safest is to do a ct-guided needle biopsy. It would be less invasive, although it depends what kind of bone lesion you have -- mushy or hard in layman's terms -- and the skill of the interventional radiologist doing it.
It took me a very long time to find someone who was skilled enough to do my hip and in the meantime, the cancer spread....
If you are in the new york area, there is a talented radiologist at hospital for special surgery, interventional radiology department.
Good luck!0 -
Hi Diana,
The bone biopsy to my femur was CT guided needle biopsy. After starting an IV with Versed and a pain med, I was in a lovely twilight sleep. I felt nothing during or after the procedure.
Caryn0 -
thank you whildchild and caryn. i like twilight sleep* lol
trying to learn what i can about bone mets*
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I was dx in March with a single met to my right iliac crest. It never hurt, well, until the bone biopsy. I have had a bone island in my left hip for about 7 years. That always hurts. I had the right side radiated and the cancer is gone. Never paid rent anyway, the bum. Then I had a bone scan and there was this big disagreement between my RO, MO, and the mean dude that did my bone biopsy on left side. Basically, no one could agree if I had cancer or not. Bone scan showed something, MRI showed something, nothing on CT, so the biopsy was pointless. That was in April. Believe it or not, my MO did nothing about whether or not there was cancer after that. Now the pain is about 1/2 way down my thigh and I decided enough was enough and changed oncologists. My new RO ordered both a Bone Scan and MRI and said there was clearly cancer there. UGH. So I am hoping Femara kept it localized to this femur and it hasn't run around to squat in another one of my bones. I find out next week. At least this time, it know it's there and it's going to get treated. He also said he would arrange for a MRI guided Biopsy, which I was told by the mean dude that wasn't possible. HA. Jerk. He let me, a diabetic, sit the entire day, until 4, before allowing me to eat anything. I have his name and I won't let him touch me again. Ever. Hoping for good news!
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Hi mz,
Good for you that you had the chutzpah to change docs and the luck to find a good one!
No one wanted to go to ny with me for the bone biopsy, so we had to find a doc willing to do it while i was awake.
They gave me ativan and local injections to numb me & drilled into my hip. Twice.
Was fine until local begsn wearing off in recovery, then was in screaming pain.
Because i was alone, they refused to give me script for pain meds. When i went back, after my stash ran out, they expressed concern about being addicted to pain killers-- can't win, eh?
Moral: you need someone to go with you, but if you do not, there are ways to do it without someone, so it won't be delayed.
Now, we confirmed bone mets, supposed to have healed, tore big tendon somehow, had two weeks of radiation to hip for pain relief and other to c1 disc to stop migraines or tumor progression to avoid paralysis because of spinal cord compression, but....
Why in the 2nd week did my hip start hurting again and continues, so i am nearly back to square 1, trying to walk without pain?
Radiation oncologist suggested edema, but no one wants to order an mri to check out what is really going on there....
The cancer filled my entire right hip socket..... we do know it has gone down one of my shin bones, but that was not radiated....
I wanted to do something better this weekend, than sitting inside doing little because it hurts too much to walk far. The drugs kind of cloud my head & and i still feel the pain....
I have flitted around to try and find a good onc, but for now, i am where i am....
Thanks0 -
i had first diagnosis of breast cancer in 2004, mastectomy and oophrectomy only treatment, declared stage 1b, ned.
grew a lump on sternum in february 2012, biopsied, diagnosed as regional recurrence of breast cancer. bone scan, and MRI showed nothing else. but, PET scan showed it throughout spine, ribs, and sacrum.
radiation caused lump to disappear over a few months.
taking lexatrole and clonasten, my followup PET shows 'significant improvement and healing', hope this continues!
best of luck to you!
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I don't think I had bone mets biopsy. I was diagnosed ibc stage IV with spinal bone mets. I had biopsy of breast lump an ibc and bone scan, MRI & Pet scan that all confirmed spinal bone mets. Been on Zometa for 3 years and now doing Zometa every 3 months along with daily Femara.
Terri
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IBC - you would totally know if you had a bone mets biopsy, since they take a core sample of your bone, under conscious, or as I had, unconscious, sedation. Sometimes your ER/PR status can change - I went from being PR+ to PR- and my HER2 status was undetermined, which bugs me a bit. So glad you are doing well on Femara and Zometa!
Niki - what is the clonasten? I have never heard of that drug before. And welcome.
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I have never had a PET yet. Kind of scary. I don't want them to find any more.
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clonasten is the drug they give me for bones.... maybe only in canada?
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sorry, that's clasteon!
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it is for high blood calcium in cancer. i haven't had any chemo drugs.
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I'm glad you had significant improvement and healing! I get the XGEVA shot for bones and they said I have to take calcium because the shot takes all the calcium out of the blood and puts it in the bones. I have heard bone mets will cause high blood calcium.
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Hiya Fellow Bone Metsters!
Welcome to the newbies and hi to those I have known for awhile. I share my little story in hopes that some of you can get past some of your fears...
Bone mets is my primary metastatic spread. It will be 3 years since the spinal bone biopsy on Sept 11th. While there was no pain, the pressure was killer as I was only 3 days out of breast surgery. Like many of you, I had no bone pain until after the biopsy - however, I did have significant back pain from degenerative disc disease. It was particularly difficult for me as I was cancer-free for 10 1/2 years. I was hormonally positive so I was treated with Arimidex - side effects being significant joint pain which may be where the lower limbs of some of you are getting the knee and shin pain. My bone mets is in my 'core' - spine, pelvis a bit, ribs, sternum, shoulders and collarbones. I started with Aredia and went to Xgeva for strenghtening the bones. I too had a Vit D3 defiency and now take 2000 units a day - no more, no less. I added the calcium supplement with magnesium and zinc. After almost 3 years, without my bones using all the calcium, calcifications started to form and it was more in my blood. In June, I stopped the calcium supplements and opted for eating calcium-rich non-dairy foods such as brocolli - much easier for the body to absorb properly. I added horsetail for its bone healing properties and the next scans showed less calcifications and a marked uptake in calcium directly to the bone. I do take magnesium and zinc supplements. There are some reports concerning some issues with horsetail but I haven't experienced any.
I did have a very uncommon recurrence in my abdominal wall August a year ago which changed me to a triple negative and did 2 rounds of chemo in the form of Abraxane coupled with Avastin and continued with Xgeva. After only 2 rounds with no success, I am now on Xeloda and the condition improved and the bone mets remained stable. There is a very long story to this but no need here. I was removed from the pain medication given to me during that time and presently managing with Effexsor, Xanax and Percecets and have little pain from the bone mets. Presently, Xeloda at 4000mgs a day for 7 days on, 7 days off, Avastin infusion every 2 weeks and Xgeva shot once a month. Tumor markers dropped and I am considered to be stable.
I get x-rays, PET scans, CAT scans and MRI's periodically - sometimes a combination. X-rays can be deceiving as you can only see shadows and generally followed with another form of scan that will show the mets - the PET scan being the primary one I have every 3 months. Yearly, I have a full body bone scan. MRI's are done when I have an issue with pain or weakness and it will show nerve impingement that can happen with the bony mets - I have the balistic form which 'builds' bone and can put pressure on the nerves and/or tendons causing numbness and tingling in my arms. Xeloda causes hand/foot syndrome with neuropathy and thicking in the foot pads and hands pads. After almost a year on the Xeloda, this SE has definately reduced quite a bit.
I do add acupuncture to assist with managing the pain and numbness and have been doing so since 6 months after my diagnosis - it is nothing short of amazing - there is needle placement to aide with dry mouth, the constant running nose, the pain, and the numbness. I will continue this additional treatment along side my traditional treatment.
My quality of life is fairly good. I do have fatigue always and do so much and then rest. I think this is present in just about all of us at stage iv. Olive leaf helps some. There are limitations - I got a handicapped parking permit as we never know how we will do at the store; got taller toilets; have all sorts of gadgets that help with opening jars, pop cans and stuff; and laundry baskets on wheels. As we find a limitation, it is pretty easy to find a solution.
Keep you heads up and be active in your care and treatment, don't be afraid to ask for help at home, if it doesn't sound right, get a second opinion, always ask the onc when you want to try something new, remember that we do experience issues that have nothing to do with cancer (imagine that), any stress that you can control - eliminate it (amazing what a little calmness can do), instead of dredding scans- look forward to them (easier said than done), hope for the best, ask questions, cry when you need to, rant here - you won't hurt feelings like you might if ranting to your support group/friends/family (we all get it here), and finally - believe and trust that bone mets is not the fatal disease it once was - as long as it stays in the bone, treatment can prolong life for a very, very long time - personally, I will be treating forever but I will be alive and living life as well as it is physcially, emotionally, and mentally possible!
It has taken time to reach this point for me - I was scared, depressed, cried all the time, got snippy and frustrated, scaniety was a regular occurance, and I worried about every little thing as if it was going to be life-ending. I found this site about a month after my dx and after looking for answers on the med web sites (with horrid results) - once here, things started to change and the advice, comfort, information sharing, and the fact that I was communicating with people who totally knew what I was going through made all the difference. I have beaten the statistics. I feel like I will continue to do so - there may be setbacks but I am strong and have the willingness to try anything that might offer relief...some work, some don't...but I will give it a whirly-girl in case it does offer a better quality of life or an extension of my life or helps with the pain. I am filled with hope in the midst of horror and the light is shining bright as it can be.
Hope that this little story assists some of you...it was the kind of 'talk' I got when I arrived as a newbie and just passing the torch, so to speak - wishing everyone the best and big hugs!
LowRider
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Thanks for the clarification, Niki! I looked it up and it had something to do with a fungus and I thought, super, another fun side effect LOL But clasteon makes much more sense!
Low, thanks for your story. Sometimes, being on the boards, it's hard to piece together everyone's stories.
I'm still a little sick at heart about Marybe.
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Hi hlb and IBc and others,
Some gals wondered about the difference between lytic and sclerotic lesions, and perhaps, which imaging tests were the most useful.
I ended up having a crash course on bone tumor mets when all my scans started lighting up like xmas trees. It took a full year to determine why i was ill, but it did not seem to show up, or they could not figure out whether it was cancer or not, or how to get an easy biopsy.
So, one radiologist who specializes in pet scans befriended me, and explained what went wrong last year when the doctors just ordered a pet scan and declared me "cured!"
1. I was told that while pet scans are thought to be definitive by many doctors, they really are not very good at picking up on all the different type of bone lesions. They are okay with lytic, but not necessarily, sclerotic.
2. There is a newer contrast agent for a better, more detailed bone scan, called sodium fluoride. I had that done twice this year. Pet scan places are doing them, but not all doctors understand what they are or are afraid of the cost. This type of bone scan gave us the best answers as to what is going on and can pick up on micro-mets, etc.
3. The american cancer society has a 24/7 hotline. A request can be submitted thru a cancer info specialist to get a call back from an oncology specialist who can research and explain about bone mets.
4. As i recall, there are two kinds: lytic and sclerotic. The former is soft and mushy and can cause stability problems, but is easier to biopsy. The other is hard
And sort of like a callous, because the bone is trying to heal itself, etc...
Mine were sclerotic, that is why i had such a tough time getting a biopsy.
However, i would like to put the disclaimer that i am not giving definitive medical recommendations and gals need to double-check the above if you have further questions, ok?
Hope that helps!0 -
Thanks low-rider, that was helpful. As the tests poured in, all flagged, no one could figure out what to do, so to my horror, it just documented the cancer spreading. One of my docs kept mentioning the possibility of breaking my hip, another, my internist, finally stared me straight in the eye and told me why everyone was afraid to biopsy the 1st disc in my neck where it started, and totally flipped me out....
I, too, never felt limber after all the initial cancer treatment, but i was on lupron and femara for years. I had problems using my hands, balance difficulties and hurt all over so much that it was tough to bend down and do much. Then, there were the migraines and nerve pain.
Sadly, my cancer doctors followed me, but refused to acknoledge or have compassion on my symptons that they could or were related to treatment. They also never celebrated my surviving, either, but i went to male docs, who were on tge chauvinist side. These symptoms, in turn, led to isolating me from doing a lot of stuff, so i had fewer friends. My original cheerleaders left the scene, after hearing the surgery was not a complete success and the cancer was found to spread to the skin.... for months during chemo, they entertained and amused me, did things with me, made me think that i had a reason and future to live for, and it was really tough on me to abandoned....like that...
I have now decided to relocate. The area i was living in was boring, i want to try and get involved with support groups and cancer people and other stuff that will keep my spirits up. Gotta run, they warned me the radiation to my neck could cause mouth sores and i have a big one on my lip that just opened and started bleeding everywhere. Have to go chase magic mouthwash at a midnight drugstore.... tomorrow, i get my 2nd round of chemo and a butt hurting shot of fadoldex, in case i have any hormones feeding the angry beast.0 -
LowRider,
THANK YOU! Thank you so much for your profile of experience with bone mets.
I received my Stage IV upgrade a month or so after my Stage II diagnosis (in L4 vertebra and sacrum). It made me see the previous month as a walk in the park--who woulda thunk it? It's scary and strange, this diagnosis. You read the interwebs and think you'll die in 2 years. But since coming to the boards I've learned that the picture is so much broader. I am at once grateful for the company, yet disgusted that there have to be any of us in the first place. I don't know what I would do without reading the experiences, trials, and many successes of the folks here.
I will be mindful to pass the torch when I have the wisdom of perspective--something I will work very hard to achieve.
Warmly,
Scorch0 -
Girls, your experiences are interesting to read. Lowrider, very nicely written post.
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Thank you lowrider and everyone for sharing experiences! I am trying to find out as much as I possibly can so I can ask good questions at my next appt. Hopefully that is when I find out that the letrozole and xgeva is improving things and shrinking the lesions! I have 3 sclerotic and one lytic, I think. The horsetail sounds very interesting! I am all for natural treatments! I read that bromelain, which is found in fresh pineapple, is also very good for our bones. I ate too much the other day and it burned my mouth. I looked it up and sure enough it was the bromelain, and it said make sure to get the whole core out and the burning won't happen. Since that is where the most bromelain is I am going to try using it in smoothiesm maybe in a smoothie it won't burn as much. My goal is to keep in these mets in the bone and nowhere else if at all possible. It took 7 years from my first dx for the mets to come and that was without any hormonal therapy so I am hoping that is a good thing, that maybe its a slow type of cancer. But who knows. If I learned one thing from these boards it how unpredictabe and sneaky this evil cancer is!
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