Bone Mets Thread
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JoynerL - Thanks for posting the link to the article on mets to the spine. It left me a little uneasy in the last two paragraphs...
“Identifying which patients should get these treatments is also difficult,” he says. The researchers are working with oncologists to help determine who will live long enough to benefit from these procedures. (ACK!)
"... basic science research will be important to continue to develop treatments specifically for spine metastases, because they develop differently than other metastases." I'm guessing they mean the remodeling of bone and the close proximity to the spine raises additional concerns.
I have experienced back pain my whole adult life so it is very difficult to separate the pain that I usually have from the pain caused by the mets in my spine. I'm having trouble getting this through to my oncologist which recently caused a bit of miscommunication and his impression of how my treatment is going on a trial. More on that in a later post.
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Babs - my only comment is please put Y90 scheduling ahead of work. I want your DD and DGD to have lots more time with you. Nothing more important.
>Z<
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I just finished radiation for my bone pain, which helped immensely and this coming Monday I begin my treatment plan. I’m starting with Femara, Ibrance, Xgeva and Lupron Depot. Does anyone have any input on how they faired during the first few weeks on these drugs? Any expectations I should have? I’m anticipating fatigue, weight gain and irritability. Any feedback is really appreciated. I’ve read through most of the threads for each one of the drugs but I was looking for more info when starting them all at one time.
Thanks so much.
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Thank you. My MO wants to move up the Y90 but due to the baby being here I can only do one week sooner. They're working on the new date now. My scans will still be 2/21 right after my DD and the baby leave.
Fingers crossed!
Babs
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Thereishope, based on recommendations on these boards, I took generic Claritin (loratadine) the day before, day of, and day after Zometa. The first cycle I did experience flu-like symptoms, but not on the scale Z did. Just achy and feverish (although I didn't run a fever) the day of and the following day. After that first cycle it got easier and now it's no big deal, I don't schedule around it. Good luck and let us know how you tolerate it.
Babs, I know you're looking forward to family visit. I hope it takes your mind off the tm's. Glad to hear you're forging ahead with the Y90.
Wishing everyone a good weekend!
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Going for my first Zometa next Tuesday (insurance wouldn't cover Xgeva) - on Femara for a week, starting Ibrance tomorrow. Diagnosed 1/7/18 de novo stage IV mets on L4 and L5 on my spine and also on my skull. 5cm tumor on right breast. Wondering if you could share your SE on Ibrance and also how much Claritin you took before Zometa treatment. Also- any tricks to handle it easier like slower IV drip, etc? Thanks for any help
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CloudNine - Zometa is the better drug, IMO. I requested it although insurance would have paid for Xgeva. I just had flu symptoms for 24 hours, starting about 12 hours after the shot. Just don't plan a trip to the zoo. I would be hesitant to suppress the symptoms with claratin or even anti-inflammatories. Zometa has an effect on the immune system that is just beginning to be understood.
>Z<
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Cloudnine, welcome to this thread. So sorry about your de novo dx. I don't know what SE's you had prior to treatment, but I was in pretty bad shape, constant cough, chest tightness, SOB, extreme fatigue, and weight loss. After 2 days on Femara I ran into my MO at a health fare. She asked how I was feeling, and I told her that I felt better, but maybe it was in my head. She said no, it's not in my head, the drug is working. A month later I started Ibrance and it was a little rough at first, especially after feeling good and having no issues with Femara alone. I got headaches, weird body aches, mouth sores, constipation, but not all severe and not all at once. First labs tanked and I had to delay the start of the 2nd cycle, but over time things settled down. You might want to check out the Ibrance thread for more info.
As to Zometa, I take one 10mg one day prior, the day of treatment, and the next day. Also drink a ton of water, which helps flush the kidneys and makes the IV easier. I get a 15 minute drip. Others have talked about slowing the drip down to make it easier to tolerate. So I asked my MO, but she said no, the goal is to get a certain concentration in the system, and that is achieved by the faster drip.
Good luck and check in when you can, new friend.
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Lita....it's always good to read your posts. You're so steadying for us. You have the knack of being totally realistic while not being dramatic about it. You do me good, thank you.
Cloudnine.....welcome. Even though it's not a place we'd prefer to be, this is a great band of women, all very supportive and caring, not to mention knowledgeable. I'm on my twelfth cycle of Ibrance. Side effects are manageable. A little bit life changing because of the fatigue week to ten days but I have at least two weeks out of every cycle when I feel well. You do get used to working through the fog, too. Don't be put off by any side effects because, like Jaylea, I was in a bad state before I started on Letrozole and then Ibrance, with the pain from stress fractures in my whole-of-body bone mets causing me to be completely bed bound for a long time. Within probably two cycles of Ibrance I was picking up and now I'm back to doing my yoga/stretches/isometric type exercises after being stiff and unable to move freely for at least a year. I can't comment on Zometa as in Australia we use Denosumab for bone strengthening.
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Hi I posted this on the Xgeva thread but got no replies so thought I would try here.
I am on my 19th shot to the tummy of Xgeva and 18th cycle of Ibrance and Letrozole for extensive bone mets to most of spine, sacrum and ribs. I find the Xgeva shot no problem and mostly I have not experienced any side effects however the last 2 months I have had lots of back pain for about a week after the shot. It could of course be the cancer, arthritis, s/es's of I/L or the Xgeva. I would be very interested to know if anyone else gets bone/back pain following the shot. I have asked both my Onc's about having the shots less often or even having a break but they say that they are waiting for the results of some research to advise the best dosing! Therefore has anyone else experienced thisor know anything about dosing research?
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Raisan, I can only speak to Ibrance and Xgeva (and Faslodex), all of which I started at the same time. I have had virtually no side effects and am on my 13th cycle of each. After this month, I will go to Xgeva every 3-4 months, rather than monthly.
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Animal Crackers, I was disquieted by this statement, too: "spine metastases, because they develop differently than other metastases". I don't understand the implication of that statement.
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Z, I’m praying that you get some relief. You are strong but I know how this disease really gets to your mind. I’m in the same boat floating along up and down. Keep us posted on the mets and what they will do next. My TMs are double after 9 months on Zeloda. Now for more scans looking for upper chest issues. Insurance denied a pet scan so I guess CT with contrast is the best for me right now. I’m praying for you.
Pat, when all of this started in the bones first my ribs hurt. It would go away. Then I developed this most unbelievable pain in my groin. I could hardly walk. My husband thought I pulled something with the work I do. Then the hip and back started. I finally had a bone scan which showed mets all over. Skull ribs sacrum femurs spine. I asked my husband what is in the groin and I think he said it’s the pubis radius sorry if I spelled wrong but they are the bones that open when one is having a baby. Those bones hurt the worst. Ask your doc about them. So painful I was sweating.
Hi Raisan Angels, I joined this group after being diagnosed with extensive bone mets. One good thing is there are good treatments for the bone. Mine has moved to the liver now. I’m 55 and very scared. Don’t read stuff online, stick to this site. If I didn’t have all the ladies here I would have lost my mind. Take it one day at a time and keep us all posted. I’ve found that there is always someone who can help you sort things out. It’s a lifesaver.
Hugs to everyone, sorry I haven’t been on too much. This cancer deal has had me up and down lately and I’ve been trying to sort it out.
😊🤗 Anita
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Anita, I was thinking about you yesterday. I got outside to take some photos of birds. They scatter easily but I managed to get this female cardinal. I'm in a similar boat as you are and may have to move on to Afinitor. Xeloda isn't doing much for my extensive bone mets, so more pain, but its keeping liver mets at bay. It's a balancing act trying to manage bone met pain and liver mets. Good luck with your upcoming scan.
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Chico - the bisphosphonates can cause ONJ which is a jaw deterioration. it is a nightmare. i would get a second opinion on getting that much Xgeva because the KNOWN consequences are very serious. There have been studies of reduced dosing and they do indicate that getting a shot every three months has the same outcome. Your oncs are simply not informed. The ASCO study suggested once a month for a year and then every 3 months after that but I declined the one year of loading doses. I'll be doing one shot every 3-6 months from the beginning. When I went Mayo, I found that their protocol is once every 3 months from the beginning.
Anita - CT with contrast is my preferred scan since PET missed progression last April. They each have their purpose and they are different, not better.
>Z<
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Thanks Z. As always you have the answers. I am changing Onc’s soon so will get this sorted out. Hope you are ok and now on the right treatment path
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Has anyone heard from Cive (Judi)? She hasn’t been on the site since January 15th. Worried....
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Linda that is a beautiful photo. I have a few cardinals too. You got a good on there. I hope you get things sorted out. I’m in the waiting game.
Z, I agree I would rather have a CT scan. The first pet scan never picked up my liver mets. My problem is that my new MO is going to do a peer to peer with one of the docs with our insurance. I had a pet scan September 2016. Then needed another one a year later and the refused it so my husband paid out of pocket. They are denying me again so I hope at least CT will show something. My blood work is perfect but TMs went from 60 in December to 135 in February. Crazy stuff going on with all of us.
Babs I hope you are doing ok. Getting these messes sorted out is so nerve racking.
Hugs to everyone
Anita
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Anita, great to hear from you but sorry you're in suspended animation right now. Hope you get answers, relief, and can chart a new successful course. Prayers going out to you.
Linda, prayers to you, too. Great shot. Is that a seed in the birds mouth?
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Just received Stage IV diagnosis of my Mom. Cancer has destroyed quite a bit of the pelvis, the doctors are terrible communicators and haven't given us much information about the diagnosis or the process up to this point. I think it's estrogen receptive. I'm trying to find more information so we can ask the right questions and make informative decisions. From reading this board, it sounds like many have chosen treatments to extend their life and are living beyond many statistics, this gives me some hope. One doctor doesn't want to do much radiation of the pelvis, just a few treatments. Supposedly surgery isn't an option, but we've gotten so little out of the doctors, so we are going to another doctor for a 2nd opinion. Any advice so that I can help my Mom and we can get the best treatment would be greatly appreciated.
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cagirl12 - i am sorry you are dealing with doctors who are not communicative. they may not be saying much because they don't know much yet. the scans show cancer but they don't know the hormonal status. they will need to biopsy the tumors to figure out the hormone receptor status and that can be hard with bone mets. there are challenges to biopsying bone mets. your number one question for the doctors is are they going to biopsy, what are they going to biopsy, what are the issues with biopsying bone mets and how are they going to deal with those issues. hormone status can be determined from circulating tumor cells in the blood. that can be used to confirm the results of the bone biopsy which, as i said, have issues and can be unreliable. you've gotta get the diagnosis right to get the treatment right and the first line treatment decisions all depend on hormonal status.
a second opinion is wise given the issues in diagnosing bone mets. and i would get that opinion before you have a biopsy done because getting the order for the biopsy done right is an issue.
it is a very scary time and i know you want to start treatment yesterday but you have the time to figure out what you are dealing with.
keep us posted. many people here to help you with the emotional part and feed you questions for your docs.
>Z<
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Thank you Jaylea. It's crazy when you have a disease like this, they say they are trying to keep you going and the insurance companies deny the most important tests you need to figure out the next step. I just don't get it. This insurance world is crazy. At least my new local MO is doing a peer to peer with one of the docs t the insurance company. She is pretty aggressive. Then I'll go back to Dana Farber with what ever scans I have.
Cagirl12, I too had my diagnosis stage 4 with extensive bone mets to pelvis, femur, spine, skull, ribs, etc. I think like Z said you need to find out what type of breast cancer it is. If it is estrogen and progesterone positive and her negative there are treatments that will help your mom almost immediately. I could hardly walk or do anything and I went to a very good hospital and got things under control quickly. First and foremost find out what type and then go from there. Good luck, and be ask lots of questions so that you can help your mom with this journey.
Hugs to all,
Anita
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Cagirl12, I second what Anita and Z said above. Your mom is so blessed to have you in her court looking for answers and trying to help. These boards are an excellent source of information and support. Good luck to you and your precious mom, my dear-
xox
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cagirl12,
I am so sorry to hear your news. You r wise to look here as you will find many brave souls fighting this war ahead of you and your mom. I am new to this also, just getting my diagnosis in Dec '17.
I have experienced poor communication with my doctors also so i can feel for you and your mom.
I have posted this on other threads but will post it here for you. Go to this link and you will find an extremely valuable guidebook for you and your mom to read through. It will go thru all the basics of the disease and treatment options. It is written for patients in undersrandable language. I suggest you read it thru and thru as your "primer." Once you understand the basics, you can learn more and it will all make much more sense. It will help you develop questions you need to ask the doctors as well.
Here is the link: https://www.nccn.org/patients/guidelines/stage_iv_breast/i...
Stay in touch here. We want to know how we can support you and your mom. I am still learning, but the beautiful people who post here, are showing me it is possible to have a good life, even with this horrible disease. Do not give up hope.
Warmly,
V
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Thank you for the support and advice. Gumdoctor, the link has been very useful.
We've had CT scans, and the biopsy. It is hormone receptive. The doctors are considering radiation first, because of the pain in the pelvic area and inability to walk. That's about all we can get out of these doctors, that's why we asked for a second opinion. I am hoping this second doctor will be able to discuss these options, and answer our questions. I've started a new list before the appointment later this week.
The last few weeks have been overwhelming and it's hard to make informed choices when the doctors don't talk to us. Praying for everyone here.
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—— I’m newer around here but I just went through the same diagnosis period;it’s a long time. Mine took 6 weeks to get all the answers. I’m probably much younger than your mom. I seem to be the youngest one around but, I also have extensive bone Mets including my spine, pelvis and hip. It was very painful. Last week Inwent through 5 consecutive days of radiation to help relieve the pain of the Mets. I’ve seen many responses about it but mine was very positive. We radiated my spine and a rib. The spine was responsive immediately and I went from being in a wheel chair to walking without a cane by the end of treatment. The rib decreased in pain about 50%. Which is pretty good. You’re right many statistics you find online are older. There are lots of new drugs.
Sending you warm hugs during this difficult time.
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just recently diagnosed with bone nets .. though the symptoms were there 3 years ago . Have started Femara and Ibrance
The first ibrance 125 mg cycle was stopped after 2 weeks due to neutropenia
Am now in my second cycle of Ibrance. 100 mg ... feel tired and headachy..
I recently had my 3 infusion of pomidronate which left me feeling as if I were going to faint for several days Bruefly I am wondering whether the impact on my quality of life is worth it... feeling overly tired, movements from sweating to chils , headaches and dizziness
I am wondering if the symptoms increase with each Ibrance cycle??
My Mets are along the thoracic spine illieum and acetabulum
I
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Hi Lev,
Welcome! So sorry you have joined this club no one wants to be in. You will receivegreat advice and support here. It's a wonderful group of people in a similar situation.
Two things I experienced were that it took a while to find the right dosage level (a couple of cycles), and the side effects diminish over time. The drugs work hard on the Mets those first months to reduce them and that causes pain. When the Mets are better controlled it hurts less.
It does get better! Hang in there.
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To all of those coping with the new diagnosis of bone mets, I'm sending you healing thoughts. It's hard at first, but things will improve with time. The pain will diminish with treatment. I have always been helped by Ibuprofen/Tylenol and heating pad. Your oncologist should be willing to work with you on managing the pain with stronger drugs if needed. It's a lot to absorb in a short time.
Best, MJH
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lev - keep in mind that the hormone suppression alone can cause those symptoms. try to maintain a routine of regular light exercise. a 20 minute walk each day is basically the minimum you need to keep the lymphatic system working and clear the drug metabolites.
>Z<
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