Bone Mets Thread
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Kathryn glad to hear your scan results
I can’t belueve Bluebird has also passed. It’s really enough already.
Got my scan results and I had a100% response to the Y90. No cancer in my liver now. I would be celebrating but I’m still so fatigued I’m losing weight and I have an awful cough but can’t seem to get to see the pulmonologist until 6/25. I wish I felt better. I intend to spend most of this weekend in bed to catch up on my much needed rest. I hope it does the trick!
Happy weekend all!
Bab
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Well said Leapfrog!
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Bab, I'm so pleased about your scan result but I wish, wish, wish you felt better. Rest, rest and more rest is what my husband tells me. Sending hugs your way xxx
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Chrissy, you will regain some normalcy once you settle on a treatment plan. Praying the insurance comes through soon so you can start on your path to improved health.
Babs, allelujah on the Y90 success. You deserve not only a weekend of rest, but breakfast served on a silver tray, a candle-scented bubble bath, and your favorite food delivered for dinner!
Leapfrog, well put. The best way to honor the friends who have gone before us is to live each day to its fullest capacity, whatever that is. We all know generally what's ahead - It is such a blessing to know you will all be there for the later innings...
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my deepest condolences for the passing of these beautiful people. I haven’t been on this site for super long and have trouble remembering names but the names of these two who have passed are ones I remember seeing/reading. Upsetting news😞
I am curious for those with bone marrow progression - what are the symptoms of any?
I think that I live in a bit of a state of some level of neurosis that every ache pain sickness etc is progression. I don’t really know what else to look for or have a level of awareness around symptom-wise. I think I have a high pain tolerance and I have a history of being a little slow to get concerned enough about a symptom to call a doctor
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Doing a very happy dance with you Babs!
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sorry Griiff I thought that was UK. Apparently I have the common bone marrow one that hasn't taken over my whole bone marrow. I will copy something that Chrissy from Aust said with the research she has done and it might make more sense
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Philly the bone marrow symptoms were a drop in hemoglobin quite dramatically which resulted in shortness of breath exhaustion but normal iron levels.
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Delvzy, I’m curious what you mean by the common bone marrow one? I didn’t know there was a difference. There must be levels of involvement. I think mine was quite involved because when they tried to aspirate the bone marrow it was like concrete. They couldn’t pull it out easily. I’m interested in the different methods used to rid the marrow of cancer. Let me know how your treatment is working. LovefromPhilly, my symptoms were non existent. Just a sharp decrease in platelets, hemoglobin, other blood work off. Wishing everyone a safe and happy weekend
Jill
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I, too, am wondering about the bone marrow one. I thought it was the same as bone mets? Not? Didn't know of any difference either. 50sgirl - seems like we have (had) pretty much the same issues. I'm hoping the Fasoldex/Ibrace will work for me too. I wish I could start today. Just want to start the treatments and quit worrying sooooooo much. Every little ache I think, oh no it's there now. I really have been feeling good, little or no pain. (Is it harder to get it out of the bone marrow- concrete)???
hugs to all and thanks for all your support - chrissy50
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Babs, great news on the scan!! So glad you got good news, now get some real rest! Blessings and prayers
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thanks for the info!!
So mets to bone marrow is diff than mets to bones?
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Ladies - Is anyone on ketamine and palexia (tapentadol/nucynta) for pain? I'm currently on fentanyl patches, oxycodone and lyrica (pregabalin) all px by palliative care consultant. I went to see pain consultant and he wants to admit me to hospital, detox me and put me on ketamine and palexia. Not sure about these drugs at all. I don't know anyone else on them. He also preformed a nerve block yesterday and my back is more painful than ever. New parts hurt. Not sure if I trust him but onc suggested I consult him...
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Babe great news. I don't understand this bone marrow discussion. Can someone shed some light on it for me? I have a bone marrow issue but it is not breast cancer. The bc is in my bone...very scattered and small throughout my body. Larger spots in pelvis and femur.
So sad to read about Bluebird. I've been away for a few weeks. Having trouble signing in. Stolen iPad. Funny how I was more upset about losing contact with you ladies than the iPad. Wow now I have a new screen name. How did that happen.
Leapfrog, so insightful as always. Maire67
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MaryE48, so there is a difference between bone mets and bone marrow mets. My bone mets were healing and my CA15-3 was dropping after 6 months on Letrozole. Suddenly my platelets dropped spurring some blood work, bone marrow biopsy and now chemo. Maybe someone can explain better. Bone mets don’t affect your blood (platelets, hemoglobin, red and white blood cells) but bone marrow mets do. The ladies on this board with bone marrow involvement mention low platelets and hemoglobin. I’m still new to this so I apologize if I’ve made it more confusing-Jill
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Bab- Happy for you that the Y90 worked so well! Hoping that a relaxed weekend can help overcome the fatigue. More weight loss is a concern as you are already slender. Sending you good vibes and virtual calories!
Starting to get digestive issues and puffy abdomen. The docs said stable but noted “cloudiness” in one scan. With iLC that word is not good. Let’s see if diet and exercise help me stay in denial.
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Iwrite...I'm getting chemo swelling in my feet, ankles, and calves. I look like my Grammy with my cankles.
Let's hope that's all it is for you because it can happen in the abdomen, too.
How is your liver doing? What does the bloodwork say about that? They're keeping an eye on mine, for sure.
They told me if i gain more than 5 lbs in a week (i only eat 2 meals a day) to let them know right away.
I have indeed gained about 5 lbs, but it's holding steady.
Keeping you in prayer.
L
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Aoibheann, I’ll PM you. I did a ketamine treatment in October and it was life changing. It can re-set your capacity for pain meds, so they work more effectively. Some doctors prescribe ketamine for everyday pain, but most people have bad dreams while taking it.
I’ve been on opiates 24/7 for cancer pain for 6+ years, so if anyone else reading this is struggling with pain control, please PM me. I’m happy to share what I’ve learned.
Babs, I’m thrilled to hear your news. So seldom do I hear about liver mets that are vanquished, and I hope your fabulous news gives hope to others. Hooray!!
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Thank you Lita!
Yep..swelling is weird. For some reason I’ve always had a fear of cankles as my legs are skinny, but now lumps are emerging on my right leg and ankle and then this weird puffiness above my waist. Eating less and weight is rising a bit.
The SGOT and SPGT (liver) tests were elevated which is why the scans were ordered. Scans say not to worry, but we all know when our bodies are wonky.
Focusing on getting settled in Colorado in the next two weeks and establishing an Uber healthy lifestyle and better CBD options before worrying excessively. The 5 lb rule makes sense especially With reduced food intake.
I’m working the Live by Living (hiking) booth at the ASCO convention this coming weekend so if Things get worse there will be tons of oncologists nearby
. DD1 ishaving a baby shower for DD2 on June 9 in Colorado Springs. Only two months to go before greeting our new granddaughter! Must stay healthy!!!
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Kathryn,
Are you doing the Live by Living program in Colorado? I was just invited to participate and have been pondering it. Really want to do a 14er. I wasn't sure because I have extensive mets in my tibia, but had radiation to a good portion of my leg two weeks ago and feel so much better.
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Hey lwrite. Thanks for the update. Expecting a great summer ahead for you.
>Z<
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Marylark- Yes...I hope to do a number of hikes with Live by Living this summer in Colorado as a volunteer as well as participant. The highest I’ve gone with them is 12K. They have a sag wagon if needed and I did use it once! Let me know which one you plan to do and I’ll sign up too
.Z- As part of this “year of adventures” I plan to drive to New Mexico and see Stuff. Willing to drive to Los Alamos for coffee or rental rehab
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Good for you, Iwrite! New Mexico is fabulous. Years ago, I took my father on a trip to thank him for all the wonderful trips he took us on as kids growing up. We flew in to El Paso, rented a car, and drove up the entire state. Went to where they built the BOMB, took the tram up Sandia Peak, Albuquerque, Santa Fe, Taos. I was actually thinking about moving there...and then I met the man who would become my husband, ha ha.
DH, DD and I are planning to go to Arizona in the early autumn b4 it starts snowing. Want to see the Grand Canyon one more time b4 I transition. Hopefully, my back will be okay to make that long trip.
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Hi Lita - Yep. I live in the place where they built the BomB. Spectacular and remote. We drove through 20 years ago and spent the next 3 years trying to figure out how to live here ... and succeeded.
lwrite - PMing you with a proposal ..
>Z<
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Just got back from my first two shots of Faslodex and a shot of xzeva (?) My insurance along with my onc are working on the Ibrance pills. It appears the hang-up is concerning a co-pay amount. Anyone else have this problem? Laying low today and tomorrow, then see how it goes for the weekend. So far, altho it is early no particular problems. Took the nausea pill. I do feel better knowing that there is a plan and starting it. On my way to battle this now! When do side effects (if any) seem to start? I still don't understand why I had very little bone pain, if the mets were so extensive?
Thank you all for your support. I need you!
crissy
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Crissy, I have bone mets practically EVERYWHERE. Most of them don't bother me that much, except the ones in my lower back, pelvic bones (primarily ischium and ilium) and my right hip (that's where there's also bone marrow involvement).
When I was first Dx'd, I had lots of rib pain and way more back and adjacent muscle pain. As you go thru "the process," things will change over time, and the pain will come and go. Keep a handle on it. You don't want it to get out of hand 'cuz it gets harder to rein it back in once it starts accelerating.
I don't have to take opioids any more - which is a real blessing. I just use cbd rubs and tinctures, voltarin gel (which palliative care dr Rx'd), and Salon Pas patches and gel when the pain is mild, and it seems to work pretty well. They don't want me to take NSAIDs anymore because of the bleeding factor (I have lots of brain mets, and they don't want those to start hemorrhaging again, since my platelets are up and down with the Gemzar chemo I'm currently taking).
L
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Hi all, I have been laying low for awhile, but I am always following. I had a Pet scan done in April, the No, not my regular, said that I have a new bone met in my left hip and my T5. We will stay the course until June and then rescan to determine how fast it's growing. I agreed. A week later my results were uploaded to my patient portal and of course I read them. Under addendum, it reads that the metabolic activity in my descending aorta wall appears stable at an SUV rate of 2.2, whereas it was 2.0 on the previous scan. What????? Looked up previous scan...nothing. Double Whaaaat? Saw my PCP doc the other day and asked her to read it. Could it be atherosclerosis? No, she says, you need to talk to MO about this. So of course I Dr Google! Always cancer! What the hell? My Pet scan is June 12th, with Mo appointment the same day. I am freaking out! A tumor in my aorta wall? Where are all the little microscopic cells traveling to in all of the blood that is being pumped past it everyday? It boggles the mind!! Has anyone ever heard of this before???
Hugs and prayers to all,
Claudia
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Geez, Claudia, I don't know what to say...will be praying for you.
I just hope it's something else.
L
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Claudia - that is tricky to interpret. An SUV of 2.0 is normal in many tissues, so what does that mean in the aorta wall? I expect that is a super-specialized question requiring a super specialist to answer. I expect you will need/want a second opinion on this one. I would not wait until the next scan is done to start lining that up.
>Z<
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Thanks Lita and Z, I'm not sure what kind of super specialist I need. Mass General did a study and they all were either cancer or metastatic cancer. Don't know if I need a vascular surgeon or a cardiac thoracic surgeon. It sounds like whatever it is , that it has to come out and be tested befoe any treatment can be done. According to the study they did, the average survival was 2years. I am so scared! I have been rock in along for 6 years with bone mets, now this! I expected liver or lungs or brain and even bone marrow, but not this. I guess my body wants to keep being the exception! Remember, my MBC came up in my face, rare, but it has happened.
I guess I'm like Star Trek, boldly going where few have gone before! Why not! I always like to be different!
Thanks friends for all the love and support!
Claudia
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