Bone Mets Thread
Comments
-
Lita - Boo on progression but good to hear it's manageable. Will you be staying on Xeloda?
Mike - Hoping the biopsies bring answers.
0 -
hello everyone, you are all in my thoughts. Big doses of strength and courage for us all. Here is a quote I found today to remind us to stick to the important stuff.
"There is nothing so useless as doing efficiently that which should not be done at all"
In scanxiety mode, will let you know results when I get them.
Love and Hugs, MJH
0 -
Everyone, mulling over the radiation option. Dh wants us to consult the RO first. He told us last time that you can only radiate an area once or necrosis will set in. Fun, fun, fun.
Yes, I'll be on Xeloda for at least another couple months.
0 -
Prayers coming your way Lita!
0 -
Lita, I have had radiation twice to ribs and twice to T-8 through T-12. I do not have necrosis. Consult with your RO and perhaps consider a second opinion. I did go for a second opinion, and in my case a very specific radiation IMRT and SBRT was suggested which I did have. Good luck as you gather more information.
0 -
Lindalou, I will certainly take that to heart. DH and I am a little overwhelmed right now. We were hoping we wouldn't have to deal with this for a few more months. We were planning a bit of a getaway for our Anniversary. Couldn't do anything last year cuz I was just too immobilized and in too much pain. Fortunately, we still have a little more time b4 we decide what to do.
It's all about QUALITY of life vs. quantity of life. I don't judge anyone...but some people in my "real Life" support groups are all about whether they will make it to 60, 65, etc. I don't care about an age number...I just want to be with my family ACTIVELY and ENGAGED, not some dying piece of meat on a rented hospital bed waiting to transition.
0 -
Ladies: Thinking of getting 2nd opinion. Any thoughts on Moffett Cancer Center, Tampa, FL. I have also discovered MD Anderson location in Jacksonville, FL
0 -
Lita - you are particularly wise and well grounded in the way you look at things. Thank you for sharing your thoughts here.
>Z<<
0 -
LIta I was looking for you! Found you. So sorry you are dealing with this progression. It's a true monster. D is dealing with kinda repeat Rads right now. RO showed us exactly 2 yrs ago to the date, she had rads to the T1/T2 area, but she must have it again, surgery is out of the question for now, and there is this plate in between that is pushing against a nerve, it has to be zapped. They are very concerned, but we told them they have no choice, many ppl are working together it should be done just so and avoid exact Rads to the one done already.
It's not an easy decision, but if you wait, you are betting on Xeloda getting rid of it? It's all a game.
We are on a tight rope, D is off tx for 2 weeks now, because of Rads. That's another thing they told her to be off Xeloda, but in the past she did not stop Chemo to get Rads. Did they tell you anything about being off Xeloda if they need to radiate? Probably will know more tom.
0 -
Hi Momall....Yes, RO told me I'd have to be off Xeloda for any additional radiation, too. Xeloda gives me diarrhea at times, and the RO said that because the beam would be so close to my colon, I'd DEFINITELY have some issues down there. (It's like that T-shirt saying someone posted on another thread: "Radiation is like a trip to Cancun...with diarrhea and a sunburn".)
Funny thing, I really wasn't having THAT much pain in my lumbar area b4 I got the scan results, but now I am, particularly today. Going to go with my old standbys so I can get some sleep tonight: Cannabis rub on the lower back and I'm going to eat half a pot brownie. Hydrocodone just doesn't do anything for me when it comes to the deep bone pain. I'm not really sure if the pain is from the tumor progression, or just my pre-existing degenerative arthritis and bulging discs. The scan didn't say anything about more compression fractures, and I'm not sure those would even show up on a PET scan anyway. The compression fractures were sustained about a year ago, so they should have cleared up by now, especially since I'm getting Zometa infusions every 12 weeks. But who knows. The pain might be because I've been sitting too much for the last 2 days. Anyway, I don't like it, and if this keeps up, I'll have no choice but to go in and have the radiation. I certainly don't want the same nerve pain I had 10 months ago.
How are Dani's spirits? This has got to be stressful for her. I'll be starting cycle 13 of Xeloda tomorrow. We'll see if I feel any better after 3 or 4 days.
They want me to get my 2nd pneumonia shot Tuesday...not sure if I should do that this week while I'm on Xeloda. When I had the 1st shot, they gave it to me on my off week. I'll email my MO to make sure.
Keeping everyone in prayer for wisdom and healing.
0 -
Oh sweetie, Cancun, the good old days. Yep. Yep. So nice to hear from you.
Also if it's by the sacrum area, just be careful, D had emergency rads to the sacrum area because she felt tingling and some numbness to the leg. Now she was feeling in the arm, and has started rads to the disk between T1/T2 and part of the vertebral. She is all right, BUT angry. I must say. How do you live a normal live, even a pretend one, if there are constant appointments and she has to talk to Mom about how she is feeling. She hates that. So do I.
Were you thinking maybe an MRI would show better your disks? I always wonder which modality is best. Yes, she had an MRI to the spine.
She is in quite a lot of pain, nurses did not tell her a/t about Neulasta pain, but I think it could be some of that, and not just pain from the spine. She is used to Neupogen but it did not work this time.
And the question is gonna be: which meds are they gonna change?
Are you staying at the dosage you were on, or they hiking it up for you. And just from a lay person's view, yeah, i think it's a gr8 idea to hold off on the flu shot. You are in California, for goodness sake, it's almost March.
Aww Canabis, how sweet it sounds. She would love some of that.
Which treatment is causing her very low numbers? Xeloda? Herceptin? Ixempra?
As they say in Cancun hasta la vista
0 -
Well, after 3 months on xeloda, following six months of taxol, PET scan last week showed "significant disease progression." So, no more xeloda. My hips and back pain are horrible. Dont know what to do...have MMJ and hydrocodone and neither one touches it. Ugh.
0 -
artiecat, I am sorry to hear about your pain. Please, if you haven't already done so, tell your doctor about it and insist on something else to try.
Below from my MBC Guide is a list of medical options for pain that you may want to discuss. You and others are welcome to request a complimentary copy of the booklet by visiting: https://community.breastcancer.org/forum/8/topics/831507?page=3#idx_73
Additionally, you might want to give consideration to obtaining Palliative Care (PC) to maximize your comfort level as much as possible. It differs from hospice care in that the patient does not need to be near end of life, and they can continue to receive standard treatment while on palliative care. Palliative care can reduce symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. Most insurance plans, including Medicare and Medicaid, cover all or part of palliative care treatment. To obtain palliative care in order to manage cancer or treatment side effects, you can speak with their doctor or nurse. Alternatively, you can look up Palliative Care providers in their area at: http://getpalliativecare.org/providers/
Pain Therapies (for severe pain) include:
- Strong Opioids medications include Morphine (Avinza, Ms Contin, others), Oxycodone (OxyContin, Roxicodone, others), hydromorphone (Dilaudid, Exalgo), Fentanyl (Actiq, Fentora, Subsys [an under-the-tongue spray] and others), Methadone (Dolophine, Methadose) Oxymorphone (Opana), and Tapentadol (Nucynta).Tramadol (Ultram) is a painkiller similar to opioids. Some others painkillers are:
- Targiniq ER, which was FDA-approved in 2014, is a new opioid that is an extended-release/long-acting opioid analgesic to treat pain severe enough to require daily, around-the-clock, long-term opioid treatment and for which alternative treatment options are inadequate." Targiniq ER has properties that are expected to deter, but not totally prevent, abuse of the drug by snorting and injection. In addition, the Naloxone in Targiniq ER blocks the euphoric effects of oxycodone and helps circumvent the constipation that usually accompanies the ingestion of opioids.
- Zohydro ER is a new extended-release, oral opioid indicated for the management of pain severe enough to require daily, around-the-clock, long-term opioid treatment.
- Hysingla ER is another strong opioid, which has the same active ingredient (hydrocodone) as Zohydro ER, the only other approved extended-release hydrocodone product.There are important differences between the two drugs.Hysingla ER has approved abuse-deterrent labeling, while Zohydro ER does not. Also, Hysingla ER is taken every 24 hours, whereas Zohydro ER is taken every 12 hours, and therefore comes in lower dosage strengths.
From: http://blogs.fda.gov/fdavoice/index.php/2014/11/additional-progress-on-reducing-the-abuse-of-opioid-pain-relievers/#sthash.DwMxtFrZ.dpuf
- Antidepressants. Certain medications called "tricyclic antidepressants" have been found to help relieve pain by interfering with chemical processes in the brain and spinal cord that causes a person to feel pain.Examples include Amitriptyline, Doxepin and Nortriptyline (Pamelor).Additionally, some people experienced a significant decrease in neuropathy-induced pain when they took a prescription antidepressant drug called Cymbalta (Duloxetine).
From:http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/basics/treatment/con-20019948
- Anti-seizure Medications. Certain medications such as Gabapentin (Gralise, Neurontin) and Pregabalin (Lyrica), which were developed to treat epilepsy, may relieve nerve pain. From: http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/basics/treatment/con-20019948
- Muscle Relaxers:Muscle Relaxers such as Flexeril (Cyclobenzaprine) can help to alleviate painful muscle spasms. Potassium and magnesium supplements can also be helpful in relieving muscle cramps, as can Epsom salt baths.
- Nerve Blocks (including Epidurals): Specialized treatment involving the injection of a nerve-numbing substance may be used. This may help prevent pain messages traveling along that nerve pathway from reaching the brain.
- Pain Pump: A pain pump may be a viable consideration when oral and IV pain medications fail to control pain adequately.The pain pump is an implanted drug infusion system that releases prescribed amounts of pain medication directly to the pain receptors (nerves) near the spine.The entire system consists of a pump and a catheter. The pump, whose purpose is to store and deliver pain medication, is surgically placed in the abdomen. The catheter is inserted into the intrathecal (spinal canal) space surrounding the spinal cord. The catheter is then connected to the drug pump.The doctor fills the pump with pain medication using a needle. The pump sends the medication through the catheter directly to the spinal area where pain receptors are located. Patients return to their doctor for more medicine when the pump needs to be refilled.Before having the pump implanted, an epidural screening test provides a temporary evaluation period so that patients can determine whether the targeted drug delivery truly relieves the pain.It is worthy to note that the system can be turned off, or surgically removed, if eventually desired.One person with bone mets broke several ribs due to severe coughing and decided to have a pain pump inserted.She was also allergic to several pain medications, and has had no allergic reaction to the four the medications in the pump.After three years of living with the pump, she claims not to have experienced side effects such as drowsiness or constipation because the drugs bypass the digestive system, and the dosage is a fraction of the norm (since the drugs are delivered directly to the pain receptors). She has the pump refilled every two months and is able to administer an extra injection if necessary.In summary, she claims to be much more comfortable than she had been before she used the pump.More information about pain pumps is located at: http://www.medtronic.com/patients/cancer/device/what-is-drug-pump-therapy
- Many of the above medications are taken orally, so they are easy to use. Medications may come in tablet form, or they may be made to dissolve quickly in the mouth. However, if a patient is unable to take medications orally, they may also be taken intravenously, rectally or through the skin using a patch.
Other therapies such as Acupuncture, Acupressure, Massage, Meditation, Physical Therapy, Yoga, and other relaxation techniques may also help to alleviate pain.
I hope you feel better soon!
0 -
Thank you so much for your response. You are the only one who answered. I'm confused about this site: how do you know when you have a response to your post?
Thanks
0 -
articat - you can click the heart near the top or bottom of the posts to make the thread a favorite. when someone responds, you get notified in the My Favorite Topics area. It doesn't mean someone responded to you, it just means that someone responded to the thread.
In addition to the BestBird's comments, radiation is used to treat painful bone mets. I haven't had radiation and I am not well versed in all the options but I would look at Stereotactic Body Radiation first. SBRT is precisely targeted and, in some case, causes a systemic immune response. In other words, it can have systemic benefits in addition to zapping the tumor/reducing pain. I am always interested in what Dr. Brian Lawanda has to say about radiation treatments. I expect others with personal experience with radiation and bone met pain will chime in once the long weekend is over. BCO is pretty quite this weekend.
Pain is a really hard problem to solve. In addition, when you are in pain, you are not in a good position mentally to take on the fight to resolve it. Professional palliative care, as BestBird suggests, is the way to go.
Hang in there. And keep pushing until the pain is resolved. You are worth it, and it is possible. Let us know how you proceed and how it works.
>Z<
0 -
dcjoslin56 the thing is no one really knows which is why no one answered. There are lots of treatments but it depends how well your cancer type responds to treatment. There are people who blow through the first few treatments but then stabilize for a few years or there are people who respond well to first line of treatment, there are also those who don't respond well to treatment. It's really hard to answer. I don't know if you are on FB, but if you are, you might want to check out Kelli Parker's page. She will do a roll call of those doing well in treatment once in awhile and she also features and outliers outloud on Mondays. Don't limit yourself based on others experiences. Sending hugs to you today. Hope your treatment is working and you are enjoying your day.
0 -
dcjoslin, not sure why your first post here didn't get more attention, except unfortunately that can happen, especially when multiple new people jump in with questions around the same time, or when a specific concern is being discussed. Anyway, sorry that happened to you. As far as your earlier question, of all the places mets can appear, bone mets are actually the least life threatening, so to speak. A recent study out of MIT, I believe, used a mathematical model never before used to show that women with bone mets only are actually living more like 10 years, rather than the 2 to 5 years often quoted for metastatic disease in general. But we are all individual, and I see many new things happening in the world of research and drugs for us, so there's every reason to be hopeful that the two bone mets you described will soon be under control. I am curious... you mentioned being taken off Ibrance and Faslodex because they weren't working. Can I ask you how long you were on them? And do you have mets elsewhere besides the two bone spots? Did those spots pop up while you were on Ibrance & Faslodex? Hopefully, the regimen you're on (commonly known as Xgeva) will show great results quickly!
Welcome to you and to the other new posters and hello to everyone else. I'm still needing to minimize my time on-line, but I do read and think of you all often. And Lita, I love your photo! Deanna
0 -
Best Bird how nice to see you pop in.. And with these volume of info, thanks for all your work.
Question: someone has one met, they already have metastatic disease correct?
0 -
Quote I ran across from U.S. National Institute of Health:
"Breast cancer patients with bone cancer only metastasis have excellent clinical outcomes."
Wife's condition. Their's more to it than this but I haven't really figured out the profile data input.
0 -
Z, I have had both IMRT Intensity Modulated radiation and SBRT Stereo Tactic Body radiation. For IMRT I had a molded hard mask made which molded to my head, and covered my shoulders and chest ( all in one piece) and kept me immobile during the radiation. The mask was then clamped down to the table with clips. It even helped keep my breathing very shallow as the mold was very tight. Even shallow breathing can cause too much movement in this precise radiation. They cut a small opening in the mask for my eyes so I could see out.
In my experience with SBRT I had a different machine and for that I had a waist to neck body mold and a type of shrink wrap if you will, to keep me immobile again. The wrap is a radio translucent material that conforms again to the mold and body. It was also very tight. I had to fight my insurance for the IMRT as it is very expensive and ended up going through an appeal. They authorized SBRT without any trouble. SBRT and IMRT can be used for different areas of the body. It depends on the location of the tumor etc.
Both deliver very precise radiation doses. In IMRT, the radiation intensity of each beam is controlled and the beam shape changes throughout the treatment, to adjust to the tumor thus the need for no movement. Usually SBRT delivers targeted radiation in fewer high-dose treatments.
0 -
Mom - Any tumor beyond the organ where the original tumor is located is metastatic. It means the cancer is moving and it definitely changes the odds. MBC is a little different in that cancer can move through the lymphatic system from the breast to the armpit and still not be consider metastatic. I believe that metastatic means that cancer has gotten in the blood and moved to a totally different area of the body. Just one such tumor is evidence of metastasis.
>Z<
0 -
dcjoslin, don't worry! not everyone will respond to every post! Sometimes I only have the stamina to send out a blanket post to everyone, even though I have read each post. I usually look to make sure that questions have been answered by someone. If not, I will try to answer, or direct to someone that can. The only way to know if someone has responded to your post is to read through them all. You will find amazing support and information here, so keep participating! To direct questions or comments to a specific person, use their user name from the left side of the post. Love and Hugs, MJH
0 -
Hi everyone, I haven't been very active here--a little more on the specific medication threads. I started on letrozole and ibrance in November for bone mets, but just found out that there was more progression to the bone and now also the liver while I was on that combo. However some of the original lesions are sclerotic. At first I switched to faslodex/afinitor but when we saw new mets in the liver we talked about adding in xeloda, since it seems I have some mets responding to the anti-hormonal and some not. My question is--am I crazy to go through 2 lines of treatment at one time? Have any of you ever done this? We just want to get it under control. I don't know yet if any of the liver mets are big enough to be biopsied but if so, how invasive and hard to recover from is that? I find it troubling (I mean all of this is troubling) that I have more than one response going on. Any advice is much appreciated!
0 -
Girl - It's a complicated question, but the short answer is that when the cancer is moving quickly and you have multiple types of cancer, chemos like Xeloda that are less specific work really well. Also, in general, I would get a biopsy of any new growth. Hard to know what you are fighting otherwise. Biopsies can be easy or hard depending on where the tumor is and its size. My biopsy was a breeze, but my liver tumor was 1.5cm (a reasonable target) and very close to the surface, nothing in the way. You'll want to hear what an interventional radiologist thinks of your situation.
>Z<
0 -
Momallthetime, when cancer is found at a distant site(s), it is called metastatic, even if it is only one nodule (as zarovka indicated). That said, limited metastasis where there are one or very few nodules in one organ is classified as "oligometastasis," and patients with oligometastasis usually have a better prognosis. Some may even live a normal lifespan (there is a chapter about Oligometastasis in my MBC Guide).
0 -
SCAN TIME!!!
After having just passed the 1 year mark since her diagnosis of Stage IV out the gate, KD is having a CT scan of her spine today followed up by an appointment with her Neurologist immediately after to review the results. Then, tomorrow morning she has a CT scan of her liver. We will review the results from that with her MO next week. It helps that her MO is eagerly awaiting the results, as he is expecting good news
In the meantime, we are picking up our boys from school on Friday and heading to San Antonio for a long weekend to celebrate her 1 year cancerversary. KD is in need of some "Intensive Mexican Food Therapy". :-) We are thinking, "Who has time for scanxiety anyway?" Besides, this is the time to apply one of my favorite quotes:
"There are two ways to face the future. One way is with apprehension, the other is with anticipation." ~ Jim Rohn ~
Just for the record, KD and I choose anticipation today.
Thanks to all for participating in this forum. You have shared so much wisdom, but even better, you have provided so much hope to us both.
Blessings to all,
Louis
0 -
Thanks Bestbird and Zarovka! As a former hospice social worker I do know about these things. I know that I underdose myself because I dont want feel any dizzier than I already am. I remember telling my patients to manage pain before it is out of control...uh huh...now I have to take my own advice! I am just whining...I know so many people have it a lot worse. Good news is - a 12 day cruise to the Caribbean in April! And dtr getting married in Vermont in July!
0 -
Artiecat - I am so glad to hear that you've advised people in your situation before. And you've seen it. You know then that pain takes away the will to fight, the will to live. It can be hard to even envision the life you will have when the pain is managed. When I hear that someone, like yourself, in pain, I am always very concerned because there is this tendency to feel you need to tough your way through it. You ARE NOT WHINING. You are dealing. The first step in dealing is talking about the pain and saying, out loud, that you want a solution.
For everyone one person like you with the will to get started in managing the pain, there are probably 10 people soldiering through it. I hope your example gets a couple of them to step up and help themselves. Thanks for sharing your situation. It will likely help man people.
Please let us know how you work through this. I am sorry the pain meds make you dizzy. Is there no simple solution??!! No there is not.
Has radiation come up as a solution for you? It really depends on what the cause is.
Louis - Enjoy San Antonio. Mexican Food Therapy is just the ticket. I expect your doctor is right, but having watched a lot of people wait for scans with a variety of outcomes I can assure you that having some mexican food is the right thing to do, regardless of what you find out next week.
>Z<
0 -
Mike3121 that's a good mantra, for sure. And so much to look forward to. Good for you. Thanks for sharing.
Artiecat, whine away, you kidding!?, pain distracts you from all. My daughter is in a lot of pain also, and it's funny what you mentioned about not wanting to be dizzy, she should be taking stronger pain killers but she wants to be aware of e/t that's going on, and be in the moment, so she is enduring the pain with very little meds. Pain has taken over all her bones. She is having Rads now for a serious fracture in the vertebrae and disk protrusion due to a mass pushing it out of place, so that's tough. If MMJ cannot help you, what else is being offered to you? What pain meds did you use already? How are you feeling now? Waiting to get better with treatment?
Girlwiththatcurl if I understand you correctly, yes, my daughter is on 3 different treatments, she is on Ixempra/Herceptin/Xeloda at least for now, even before she was on Ibrance/Letrozole and Herceptin. I think it's the thing now to add more stuff then a few years ago, they did one at a time. Xeloda def came into play when the liver spots showed up.
Lindalou yep, Dani went through the same thing. She is having SBRT again now.
Bestbird thanks for the info on the mets, I thought so, it's not in Dani's case unfortunately, but needed to know.
0 -
Xgeva question, so I had my first shot a week ago Thursday, I am finding for the last 3 days or so I HURT, just all over ache, heat seems to help it, so does ibuprofen. or stronger. Now yes I have bone mets but this is new.(It has been really cold and damp...
Now I did stop aromison same day and some of the achiness I would get with PMS way back when so wondering if it is hormonal but gut is pushing towards the Xgeva, but I didn't feel like this with zometa.
Any suggestions for making this better it really sucks!
0
