Bone Mets Thread
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Gracie, I'm so very sorry to hear of your friend Gaye's passing. It sounds like she was a very special person and friend; strong and brave. Wrapping my virtual arms around you for a big hug.
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Dammit, we're losing too many wonderful women to this rotten disease.
Prayers going out to Gaye's family and dear friends.
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Gracie, So sorry for your loss. Friends mean so much during this time. Sending hugs to you
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Gracie, My thoughts and prayers are with you as you deal with the loss of your friend Gaye. She sounds like a strong, special person.
Lynne
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Dee, It is always good to hear from you. I seem to have settled into a routine of sorts with 100 mg of Ibrance. After even cycles, my neutrophils are just high enough to start the next cycle on time. After odd cycles, my neutrophils are too low at about 700, and I need a two week break instead of one. The explanation, of course, is that my counts are higher when I begin the even cycles because of the longer break. My MO had suggested dropping to 75 mg after cycle 3, but I resisted, and so far this is working. We shall see how long my MO puts up with this since I just completed cycle 5. We walk a fine line here.
Hugs, Lynne
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Zuri had stage 4, incurable cancer - then she took part in a revolutionary trial at the BC Cancer Agency. Six years later, she's cancer free. More: http://www.cbc.ca/natureofthings/episodes/cracking...Zuri had stage 4, incurable cancer - then she took part in a revolutionary trial at the BC Cancer Agency. Six years later, she's cancer free. More: http://www.cbc.ca/natureofthings/episodes/cracking....
I've signed myself up for this one, I don't know if it allows people from other countries but I would maybe try.
Last year they only took 700 people because this study is run only on donations and costs 25000 per person.
This year they are taking 2000 people.
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Good morning everyone!!
Gracie, so sorry about your friend. So good to see you, Mom, Lita, Kathryn, Amy, Barbara, Linda, >Z<, I know I missing someone, I just don't have Mom's memory for who's here and I was 22 pages behind, I can't go back now...
Wendy, I sent you a PM, but also was going to recommend the POG program. I tried to get into it before I started the Paloma trial, but they need to take soft tissue samples which I didn't have. I really researched this & desperately wanted in because I think this is a game changer. I hope you do it.
Thanks Lynne for your insight, I don't want to go down in dosage but my neutrophils are so close to the edge every time, but I'm heading into week 3 and no problems, so if it's just numbers I will fight for an extra week off even though it means more travel for me.
I have scans again in March. For some reason the ones in December they compared to scans 15 months ago. If they aren't going to compare them to the ones 3 months prior why are they bothering to put me through that??? I tell you, the big city cancer agency talks about our little backwater hospital like we're still using leaches, but they always get my scans right. sorry for the rant.
I'll pop in from time to time but I'm really trying to get my head out of breast cancer all the time, I don't think it's good for me. Anyway, (((hugs))) to all, I'll check in again in a couple of weeks. cheers, dee
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Well more progression from the CT, moving on to Xeloda in next few weeks. Dr doesn't want to give AA more time with failing on Ibrance. Moving on to Xeloda. Oh and I have a cracked rib in my back from just turning funny. So off to read more on that!
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keet, I use one of those grab bars that you insert under the mattress so I can turn over in bed carefully. I had 4 rib fractures at dx. Dr told me I can easily Crack more just from rolling over the wrong way, sigh.
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Hi Dee! So good to see you and know you are doing well on Ibrance. Completely understand wanting to avoid thinking about this!
Keet - Ugh...progression. Good reports on Xeloda and sending good mojo that it works for you for a long time!
Lita and Keet - Rolling over causes cracked ribs...you guys do not need that on top of everything else...Lita it's time to break out the bubbly and the lovely glassware again to celebrate being alive, even if it isn't what we expected at this point.
Wendy - I look forward to hearing about that trial. It sounds so promising...wouldn't we all love to have NEAD for 6-12 years!
Lynne - The neutrophil issue is constant here, too. I've had to take off two weeks between cycles the last two months. On the positive side I haven't had to plunk down the $2,500 deductible for my next cycle...it still is worrisome when the counts don't bounce back.
I have been getting a daily Metastatic Breast Cancer Update and saw something interesting today. Researchers in Michigan are looking for signs inside current lesions that are sending messages out to start progression to new sites. The goal of the study is to find ways to prevent those messages from cueing progression. Here is the link: https://www.eurekalert.org/pub_releases/2017-02/mm...
I watch these to see if there are any upcoming trials available when I need them.
Take care ladies!
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Hey Keetmom. Xeloda is a great drug and will make short work of whatever is going on.
Dee - Good to hear you are doing well. Fingers crossed that your scans are so boring they fall asleep reading them.
Gracie - I am sorry for you loss. It's hard to keep one's chin up when we lose so many people all the time.
Wendy - Very interesting trial. It looks like a version of the MATCH trial where they do some sequencing to figure out what might be driving your tumors growth. However, they take a different approach to genetic analysis and the list of drugs they will match you to is much much bigger. I've got my eye on it. Only for BC residents now, but they do have plans to expand. Here is the link to the trial itself.
That would be a great next step for you. Hope you get in and tell us all about it.
>Z<
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Hi Everyone,
Kathyrn, Interesting article. I went with a friend of mine who was Triple Negative to the Michigan Comprehensive Cancer Center. Great place and very well known research coming forward.
Amie, I'm sorry to hear you have progression and that you have a cracked rib on top of it. I will PM you with something UW is doing with Entinostat. I'll send it to you.
Lita, Loved your photo and wine salute.
Hey Dee, you know I love your cheers!
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Wendy's trial is kind of happening all over the place here in the states. Most research centers (Fred Hutchinson, MSK, Weill-Cornell) are setting up personalized genomics centers. It's a HUGE profit center that no one wants to miss out on, and better standard of care for each patient.
Spouse is in the biz, so I get to hear all about it. I'm not eligible because bone mets don't provide a quality tissue sample, and I just recently sprung some liver mets, but they are too small (for now, heavy sigh). Any tissue samples from my mast 11 years ago aren't viable.
11 years ago, I didn't even have access to oncotype testing. The pace of research for our disease is staggering.
Does it help to know that the article Wendy linked to is somewhat disingenuous? The patient referenced isn't cured. She's NED, and probably a super-responder. And, I'd bet good money that the diabetes drug mentioned is Metformin.
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Hi BlaineJenn,
I'm all ears about personalized genomic testing; we certainly don't have that where I go! Interesting that it is not done for bone mets, which makes sense, but I wonder if you have links to what they do (and don't) test for, and whether any of these places are better than the others? I would not want to get too far down the treatment road without having this done, but I do wonder how much of a difference it can make when the list of effective treatments available seems (to me) to be rather short (AIs/Faslodex, A/A, Xeloda, Abraxane, meh..)
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Well, I got an advanced copy of the PET scans on DVD. I've spent the last couple of hours pouring over it and comparing it to the previous CT scans. Surprisingly, the PET scans are much easier to read as the radioactive isotope really makes the cancerous sites light up. All the previous areas are still lighting up - no shock there: Spinal areas, hip, pelvis, psoas muscles, etc. But I also saw some new areas of activity, particularly in the sacrum area, and it looks like lesions on the kidneys and adrenals are definitely spreading. I'm not going to freak out about it yet because, heck, I am NOT a radiologist. God help me, maybe it's something else.
They did extra views of my lungs (which concerns me)...once again, not gonna freak out yet, but stuff showed up in parts of my lungs that are VERY bright and consistent with the brightness of the lesions in my spine and hip/pelvis areas.
I'm not surprised by any of this. I was told that there MIGHT be progression since we reduced the dosage and scheduling of the Xeloda to minimize some of the debilitating side effects and give me a little better quality of life. And since I presented at initial Dx with SO MANY areas back in April, this is to be expected.
I'm grateful for the last two and a half months since the Xeloda dosage was reduced. Other than the usual fatigue and occasional diarrhea, I've been doing pretty well, considering where I was 10 months ago. That may change dramatically because they'll probably put me on a much stronger chemo now. Dr told me this would be a very strong possibility.
So, that's where I'm at this afternoon. Just gonna have to brace up for the next phase of this adventure.
(Re-posted from "Things are going downhill" thread)
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Lita. Sorry for your progression. Don't freak out until you speak with your MO. It's one crazy ride we're all on!
Babs
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hi all,
i am
curious,where did your bone mets start first? i had some pain in my lower radial bone up to the wrist and i mentioned it both to my MO and BS and they were not so concerned. they said something like they are not the usual ones to get affected. but i am keeping an eye on it and it seems to be disappearing now.. ty
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Ty,
My original bone mets were spine and hip areas- that's the usual places. My RO once said there are seldom mets below the knee or below the elbow, BUT he did once have to radiate a woman's little finger.
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Lita - I hope your reading is wrong. I would definitely wait for the report and MOs interpretation before drawing any conclusion. As hard as it is, I know.
kae - that would be unusual places but if the pain persist, insist on some investigating. My original bone were mostly in pelvis and femur.
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kae_md99 - my bone mets were found at initial diagnosis of the breast cancer and I was asymptomatic. But the mets were found in my sternum, manubrium, thoracic and lumbar spine, iliac crests, pelvis. No mets so far in any of the long bones.
The pain you are describing sounds like tendonitis (tennis elbow), medial epicondylitis (golfer's elbow) or carpal tunnel syndrome or even arthritis. You may have some inflammation in your elbow. It doesn't have to come from repetitive use like playing tennis, golf, weight lifting, typing as you would expect. It can be brought on by chemo treatments. My dad experienced this during and after his chemo treatment for esophageal cancer. It eventually went away.
It is hard not to think every pain we feel is related to a progression in our cancer. I think we all do it. Often the pain is caused by our treatment. However, I always think it is best to report all aches and pains to our MOs. Even if they are not concerned you are on record and if it persists you can point back to when it started. Are you able to take advil (ibuprofen)? If you can take it give it a try and see I fit helps.
Feel better.
Cathy
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Lita I know it's so hard but try and remain balanced. I won't even read my ct reports (got my biologist daughter to do it) because I'm such a baby. You are much braver than I , I found the most comfort after progression talking with others in the same boat. You aren't alone in this and that's powerful.
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Lita - we are here for you. Keep us posted on what the doctor says. I think you are handling this beautifully.
Cathy
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Kae, my bone met was discovered during dx, a 1 cm lytic lesion of the posterior left iliac bone (hip). I had no pain and it didn't light up on the scans like some do but it was suspicious and biopsy confirmed it.
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Gracie,
I am sorry to hear about your loss. It is so hard to see friends and family pass especially with a similar DX. May Gaye RIP with the Lord.
I pray the lord holds you tight during this tough time.
Ronnie
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Just got the results of my wife's last PET scan. Multiple mets to spine. Going to have a biopsy next week and a brain scan just to check it out. Oncologist is unsure as yet what BC is involved as my wife has had ER/PR+ 100% estrogen Grade 1, ER/PR+ 30% Grade 3 and Triple Negative Metaplastic BC. Most triple negative does not go to spine first but that seems the first place for ER+. Evidently tamoxifen's not working anymore. If they can't get a good biopsy he'll recommend Xeolda. Besides Xeolda works against both types.
This cancer seems to be moving fast.
Not the results we were hoping for.
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thanks ladies, yes my BS said it could be tendinitis..
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Mike - I sorry you are dealing with progression. Be aware of the high error rate with Bone Met biopsies. Given the uncertainty of the biopsy and the fact that you've got multiple types of cancer, Xeloda could be a good choice. The fact is that when cancer is on the move, chemo works really well.
>Z<
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Progression confirmed, but not as bad as originally thought. Area of concern: Colon! I did not see that at all when I went over the scan.
Stuff on the top of head is skin mets, which I anticipated. Not to worry, per MO.
Kidney and adrenal areas still active, to be expected and new areas in sacrum area, as I saw and predicted, too.
Lungs always light up, so I was indeed wrong there.
Need to consider radiation for certain areas, per MO.
Thanks for prayers!
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Lita, am so sorry to hear of progression
Something we all worry about. But colon sounds like something they could get on top of. Will be thinking of you and praying. By the way, I loved your picture Mike, Sorry too, to hear your news. It will be good to get results so you know what you are dealing with. Will be praying for you.
Thank you to everyone who posted about Gaye. I have been blown away by it all. I knew she was really fighting it, it had gone to her lungs, but this happened very fast.
Lots of pain tonight, I walked today, without my fitbit, I forgot to plug it in, and I'm paying for it. Breakthrough pain even with Lortab, from the left hip to the knee, and when I sit down, I can feel the throbbing in my ankle as well. I think this is the worst it's been so far. Kind of worries me, but then, we all do that worry thing!
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Lita - So glad the lungs are nothing. That is hard to deal with. I am glad radiation is on the table as it makes short work of critical mets. Let us know the plan. This S@#ks but it is manageable. Hang in there.
Gracie - Careful with pain. It gets to your mental state. Take exquisite care of yourself. Thinking of you. Hope you you have an easy day planned tomorrow ... and then maybe aquatic exercise? Something really gentle.
>Z<
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