Bone Mets Thread
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Dear rgc77,
Thank you for the photos ofyour lovely family. Sending you wishes for precious time with those you love and peaceful pain free days.
We are with you in spirit on this journey.
Kathryn
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Dear rgc, I have no words, but your words inspire me. I have only recently begun to accept the reality of what my diagnosis means for my future, or the lack of it, and what it means for those I love. I can only hope that I can muster the kind of grace you have shown when the time comes. It seems much love and support has come your way, and I suppose that's the most we can hope for. Carry on.
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rgc77, you are an inspiration to us all and an example of the peace God can give even in the toughest times. Thank you for your courage. Your kind and thoughtful post is another strong thread to bind us together.
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rgc77, I hope you know how much you have helped each and every one of us with such a display of grace. That grace is a window into what an incredible person you are. No doubt it has been marked on your family as well.
I wish you and yours peace and love,
Mary Anne
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rgc77, the other ladies have said it all. I actually cried when I read your post -- not only because of what you are dealing with, but because you continue to exhibit so much beauty and grace in the face of it.
I pray your doctor's prediction is off by many weeks or months. In the meantime you and your family will be in my thoughts and prayers every day. As a dear friend, a pastor's wife and bc survivor, once told me, only God can add or subtract days from our lives, and since it's obvious you are a woman of faith, I hope this thought will comfort you as well. God bless you. Deanna
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rgc77, I admire your strength and your love for your family shines through. I wish you peace as you transition surrounded by those you love and who love you. You have us as well. Peace and love to you.
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rcg even though I don't "know" you but you are my sister and will mourn you just as I mourn everyone of my sisters who leave this world due to this horrible disease. Thank you for sharing your goodbyes. I pray that regardless of how much time you have that you and your family can have peace and strength during this transition. I love you sister from afar, sister in arms. God bless.
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rcg, thank you for your beautiful post. We are so sorry this is happening to you and your family. Your words were so poignant and your love for your family moved me beyond words. Your grace and love of family and faith came through loud and clear. I am sure the Lord is holding you in the palm of his hand to get you through this. My dh and I will keep you and your family in our prayers. God bless you and your family.
C
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rcg, Thank you for sharing your story with us. I am touched by your strength, your grace, your faith, your sense of peace. You and your family are in my thoughts and prayers. I know that God has wrapped his arms around you.
Lynne
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rgc i saw your post a couple of times, till i got the courage to read it. Your thoughtfulness shone through all the time, i thank you for reaching out to me personally, and your support. You are quite a lady. Wish you peace.
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rgc, love to you and your family from Australia.
Narelle
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RGC, wishing you every moment of love and peace to be had in this life
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Hello Ladies
My MO wants to start me on either Zometa or Denosumab. What is the difference between the two? I believe she said they are both injections. I understand from reading the posts there are side effects. Is one a bit easier than the other to tolerate
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Hopefulgirl, I haven't taken Zometa but I get injections of Denoumab (Xgeva). I have not had any problems with the injection. When I was first diagnosed last August I went to Dana Farber in Boston and he put me on Ibrance and denoumab. Every four weeks for the bone shot. They thing he told me was that your Calcium level has to be above 8-9 or you can't get the shot. So he told me to drink milk and take caltrate 600 with vItaminD twice a day. The only thing that causes a problem is if you have dental work. These meds can cause some type of problems with the jaw. So get your dental work done and if you go for a cleaning let them now you are taking either medication you decide. My bones have gotten better from this and now my MO moved me from every 4 weeks to every six weeks. Hope this helps. Don't be afraid of it. I think it's a good medication for strengthening your bones.
Hugs,
Anita
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Just to make you all smile today I'm posting one of my favorite photos that was so cute. Every time I look at it it makes me laugh and forget about my MBC. I went out very early in the morning on the Okavango Dellta and came across a mucky water hole. This tiny baby hippo erupted out of the muck and I wondered if he had ever seen a human. He smiled at me and I caught the shot. He has no teeth!! A baby Hippo with no teeth he was so cute!! This one is for you Wendy. Have a good Tuesday and hope everyone is feeling ok. Hugs to all, Anita
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Hey there,
I haven't been posting as much as I use to as I am taking care of my 10 month old grandson. On 6/29 I posted stable results from my 6/27 CT and Bone scan with the exception of some spots in my right hip. My ONC sent me to my ONC Rad Dr. as a follow up. I met with my radiation Dr. yesterday for a more in-depth review of my scans. I was dumbfounded when he said I had significant progression. New L1, L2 tumors, tail bone, clavicle, and hip tumors which were not part of my original dx. He also said my hip is deteriorating and wants me to see an Orthopedic Dr. Last but not least hew was going to speak to ONC on future plans for Chemo. I left that appointment in a fog, I had told my husband it was a routine consult
I have 10-15 rounds of radiation scheduled next week as part of my new treatment plan.. I am so depressed its a reminder that cancer will eventually be the death of me...Ronnie
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Hey there,
I haven't been posting as much as I use to as I am taking care of my 10 month old grandson. On 6/29 I posted stable results from my 6/27 CT and Bone scan with the exception of some spots in my right hip. My ONC sent me to my ONC Rad Dr. as a follow up. I met with my radiation Dr. yesterday for a more in-depth review of my scans. I was dumbfounded when he said I had significant progression. New L1, L2 tumors, tail bone, clavicle, and hip tumors which were not part of my original dx. He also said my hip is deteriorating and wants me to see an Orthopedic Dr. Last but not least hew was going to speak to ONC on future plans for Chemo. I left that appointment in a fog, I had told my husband it was a routine consult
I have 10-15 rounds of radiation scheduled next week as part of my new treatment plan.. I am so depressed its a reminder that cancer will eventually be the death of me...Ronnie
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Ronnie - Above all, that is a lesson in how subjective the interpretation of scans is. Given you just got wildly different interpretations, I would get another opinion. I expect ambiguity in scans, but to have two reports come out that differently is weird. Remember that radiation oncs like to do what they do. That is great, but can sometimes lead to zapping things that are not there. Sit down with a straight up radiologist who does nothing but read scans before you play 52 card pickup with your treatment plan. Get a second opinion. Under these circumstances it is fair to demand one.
In between treatment changes we generally find a way to live in a happy and healthy state of denial. No you may need to switch treatments, and every time we do it brings back all the trauma of the original diagnosis. Remember that there are a lot of treatment options and you've been through this before, gotten through it. We do move from treatment to treatment but often for a very long time. Bad scans are traumatic, but also an opportunity to change strategies and get this thing under control.
I am expecting the outcome will be something like... it's not as bad as this rad onc says, but it is still time to change treatments.
In a few months, you'll be rolling with it and back to cheering the rest of us on.
In the meantime, gentle hugs and take exceptional care of yourself.
>Z<
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Hopefulgirl, if you have a choice between Zometa or Xegeva, my recommendation is Xegeva (Denosumab). Zometa is an IV injection 15 to 30 minutes (the slower the better), which commonly results fever and aching SEs for first several infusions. Xegeva is a shot on the arm or abdomen. It takes less than one minutes and has no SE on me.
I started with Xegeva more than 3 years ago. At one point I changed the insurance, the new one required me to do Zometa. With all possible SEs following the infusions and crying tears, my Onc nurse was able to convince the new insurance to switch me back to Xegeva. I have asked to reduce the frequency, but my Onc still recommends monthly shot after 3 years.
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Hopeful~ I have once a month shot of XGeva and for me they are a bear. I take Claritin everyday and Aleve the day before I go into the shot and for three days after and the only thing Ive noticed is extreme sleepiness, there are others here that it gives energy to and they love that. Me not so lucky there. But I will say the shotis a breeze compared to any infusion. But please take Claritin, I wouldn't want you writhing in bone and joint pain like I had my first time out. Hugs for you! ~M~
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Ronnie, I can't help but notice no chemo. When "The Beast" is rampaging through your body that's about all that can stop it. Most chemo's though are no walks in the woods either. Xeloda is working for my wife's bone mets; she's triple negative.
Praying for you
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Anita, LOVE the baby hippo!! Thank you for posting! Where on earth was Mom? I'd have been a bit concerned that she would have objected to your visiting with her yet toothless child!
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Hi! How are you doing all ? Wish all is fine
Ladies I have a question here . Here in lebanon where i am taking my treatment i am a foreigner and i have no insurance off course and in Iraq my country Perjeta is not available I may only take Herceptine .anyway While I am here i took radiotherapy and Doctor decided on Chemo and perjeta and herceptine combined . Untill the radio and the Chemo the cost was managable but with the targeted therapy that is life long i dont know what to expect . Its about 8,000 $ every three weeks with the herceptine and as i may manage for a year or two but certainaly not for any longer I am no billionaire . off course I want the best treatment is there , and I am to meet my oncologist next tuesday so to tell me the final decision on my treatment but I want to know now I am stressed . How did you manage financially ? And is it of the same cost everywhere ?
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starstuff, I work for the state, so my insurance is pretty good and covers most of my treatment, what's not covered has been manageable so far. I would let young oncologist know that you have financial concerns and ask what treatments are the best use for the money. Once you have all options/opinions, you can make the best decision for you.
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Ronnie, I must agree with "Z". When I was diagnosed in August I had a broken hip on the right and a lictic lesion which is a hole the cancer ate through on my left femur. I have tumor in the sacrum and lumbar and thorasid vertebrae. Bone mets on both shoulders and skull. My husband is a Radiologist who found all of this but the MO he worked with said it was treatable. My husband questioned radiation and my MO said no. Ibrance and Xgeva and Faslodex. After one month my pain was gone and didn't need Radiation. My MO sent me to Boston to Dana Farber and they also reviewed all of the scans and did not recommend radiation. I have recently had progression to the liver so my treatments are Xeloda with Xgeva. My bones are improving. My blood work is improving as well.
I think that you need a second opinion right away before you go through all of the radiation. It may not be necessary like I had. Just a different treatment plan as "Z" said. My Local MO insisted on me going to Dana Farber for a second opinion. There is no harm in doing it. A good doc will always recommend a second opinion. If they don't change Docs. Hope this info helps. Don't be afraid. We all have crazy things going on with this disease but you will get through it. Keep us posted please. We are all here to help from all of our crazy experiences.
Hugs,
Anita
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JoynerL, Mama was close by and erupted from the muck and tucked the little one close so we moved on. You never tangle with a hippo especially one with a new born. But it was so cute and innocent.
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starstuff .....maybe your doc can contact the drug company for you, most of them have compassionate care programs that can help with costs....my doc got me approved for a $12,000.00 a month parp inhibitor that they are using off label with me(fda only approved it for ovarian cancer)....its worth asking about , Good Luck!!
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Ronnie: Rads for Stage 4 people are usually only recommended for palliative pain mgmt. I had rads to T3 vertebrae last year, and it helped TREMENDOUSLY. I was in unbelievable pain, and the rads shrunk the mo'fo tumor down and stopped the pain in its tracks. January of this year, my right upper leg started to go numb. Then the ripping pain started in late February which went from my right lower back, around to my thigh, and right down my leg. It was so bad that I could hardly walk (had to leave several stores because I simply couldn't complete the shopping). Once again, rads to that area helped. I CAN BEND OVER NOW! And my sleep is better. Truth be told, I should NOT have waited so long to get more rads.
There is a limit, however, to how many rads the body can take before tissue necrosis and other problems set in. Rads are no picnic. I would definitely get a second opinion, My team at Kaiser ok'd my rads each time. Keep in mind, they won't just give them to you because you ask them. They have to evaluate your condition, the efficacy of treatment, etc.
Hopeful: I get Zometa infusions for my bones every 12 weeks. The first one was miserable...felt like I was hit by a truck the next day, and I had diarrhea. Part of that is because NO ONE told me how to PREPARE for each infusion. I took a chemo prep class, and now I know what to do, and the infusions are a breeze. I eat lightly the day b4, day of and day after (no spicy, greasy food, etc.), drink a LOT of fluids day b4 and day of, and REALLY important, take a Benadryl an hour b4 the infusion. The oncology nurses told me to do this. They will tell you things that your MO might forget to tell you. I ask for a little extra saline in the pre-push b4 the actual infusion drip and in post-push, too. Incidentally, I'm having another Zometa infusion on the 17th, and I'm not worried at all. It will be my 6th one.
I've heard that some people have problems with Xgeva shots, too. Keep in mind that everybody responds differently to all these Tx. Some won't have any problems whatsoever, and some of us will have EVERY side effect known to man. [Ummm....that would be me.]
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Lita57-
This is such valuable information for anyone. Thanks so much for sharing all of that. I happen to be on Xgeva with no SE so far, but who knows. I will retain your suggestions lest I ever have to change to Zometa.
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Anita thanks so damn cute , yes I've heard more people die of hippos than lions in Africa. My brother in law is working over there maybe I need to go visit.
Z so wonderful to hear from you again you always can manage to calm things down you are a good soul my friend.
I hope all you ladies are managing to enjoy the summer weather. I've starting biking again and it feels wonderful the ocean air hopefully is doing me some good. Sometimes it's a bit of an inner battle but once I'm out there it's heaven.
Lots of love to you all
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