Bone Mets Thread
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Gracie I'm so glad you are getting everything checked out, we always need to be so proactive eh?
So a quick update , after all the 80s movies I've seen about cancer and chemo this experience today didn't match up at all. No pain and because of the steroids and Benadryl I feel super awesome right now. Taxol is made from trees I kept telling my hippy brain that as I watched it drip into my arm. So now we will see how it goes from here. There was some issues with my liver enzymes they were somewhat high but they went with it anyway and I'm so glad. Now it just needs to work
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Wendy - they really have figured out these drugs. It will be different and the mets will be history. Thanks for checking in. Was thinking of you. Glad to find you upbeat.
>Z<
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Wendy and Gracie,
OK, you're on a roll girls! Phew! Relieved for both of you getting what you need. Praying you are both on a well deserved upswing!
May the force be with...MJH
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Wendy, I am just believing that you will do well on Taxol. I just had my ninth infusion today. Here's what I have learned so far...
-- Guzzle water. Before chemo, during, and after. You want to be a taxol peeing machine.
-- Take Claritin. Big help.
-- Ask for Ativan or something to help you sleep on the steroids.
-- If you don't have any kind of reaction to Taxol in the first couple of infusions, you can ask them to give you a half-dose of the steroid drip. Made a HUGE difference for me to go from 10mg to 5mg. I still feel faux-good the first two days because of the steroid boost, but I don't have the awful, horrible, no-good very-bad steroid crash on Wednesdays at 5mg. (Especially if I take Claritin.)
-- Don't buy a wig with "heat-defiant fibers." They cost a fortune and go frizzy within a month. Ask me how I know. Get a wig that is fully hand-tied, with a wig cap that has a soft lining, because they are much better for bald heads. Those other caps are for people who have hair to buffer the itchy stitching. Take a look at Julianne wig by Jon Renau. You and I both have/had big beachy waves, and this is one of the fuller, beachier wigs out there, and it has a bald-friendly cap. I really like it.
Cheers and chin up, friend. We're all in this together.
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Good to hear from you Wendy. There's a helpful Chemo Survival Tips book that a woman I met has published. Very practical stuff. If I can find a second copy I'll pick it up. I just sent mine to a colleague getting chemo to reduce pain from cancer in her liver and gallbladder (she's only 40!). Good luck! I feel good that this will work for you.
Gracie, glad you're getting your heart checked out!
Babs, great picture she and so glad you had this experience with your daughter. What a joy!
Lita, how's your pain now? Hoping it can get under control both day and night.
Sending hugs to all with progression and pain. This is such a rollercoaster.
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Got my scan results today and it's all good news. My big met in my hip is hardly "conspicuous" on the bone scan as there is very litter tracer uptake. No new activity was picked up elsewhere. My CT scans showed other tiny sclerotic spots in five other spots in my bones but my doc isn't worried about those. If I have another good year on my current meds, they might take me of for of the Ibrance. I'm very grateful and will do my best to proactively eat better, move more, stress less and laugh often while I ride this good in because I know it can all change at any time
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yah Wendy, I'm so glad you got through the first round well. What a relief that has to be! That chemo will kick the mets butt!
Gracie, My story about a treadmill.........l I had to do one once for a Mitral Valve prolapse test. Back then they wrapped your upper body in a very large spandex "Ace" bandage, sans bra, to keep the taped on electrodes from coming off. Being rather well endowed, I tend to bounce when running. When they got to turning up the treadmill and I had to run, the ace slowly but surely started to unwind and fall off. Both me and the technician were laughing pretty hard but I was also MORTIFIED!!!
Great useful information lulu!
Great news Jen, good way to stat the Spring!
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Jen, I'm still in a lot of pain. Will see RO on Wednesday. Hopefully that will help, or its on to stronger chemo to shrink mets down.
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lita. Hoping for pain relief for you
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Lita sending gentle hugs and prayers.
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Wendy so good to hear they are fast tracking chemo I am sure it will kick this in the butt for you
Z my friend about 5 years ago went to a place outside Frankfurt in Germany and had hypothermia with chemo with stage 4 cervical cancer . I am interested in hearing how you go with it and the science behind it. From what I can understand it is more effective with the body temperature raised?
I had some news today that made me cross, a friend from my sons footy team had breast cancer 3/12 years ago and it has returned in her femur we both were complaining last footy season me with rib pain and her with hip pain that we both put down to other causes. She has 4 little children from 13 down to 4 so sad.
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Lita~sending prayers of strength and recovery. I truly hope that the RO can figure out where to zap those buggers!!! ~M~
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Delvzy - Hyperthermia basically means increasing your body temperature. It's HyPERthermia. It's a fake fever. Kills cancer because they are poor at getting rid of heat do to the disregulated growth of capillaries in tumors. A regular old fever works just as well. How did your friend do?
I will be providing a full report, but now thinking it will happen in August.
Wendy - Dr. McLeod is well respected in complementary cancer treatment. Vancouver has a winning combination of a wealthy population and a supportive regulatory environment of non-standard treatments. Many good doctors. I'll be seeing Dr. Parmar because he's a buddy of my naturopath and a specialist in hyperthermia. But you have a lot of good options for complementary oncology. There are many things you do WITH chemo to make it work better and reduce the side effects.
Lita - I am expecting the RO will make short work of the mets and get you pain free quickly. Only wish it was scheduled for yesterday. I wish you were not in pain.
>Z<
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Went to MO today who thought everything was great. Talked about going on 2 week on 1 week off regimen. Then a few hours later got my TM results and all 3 went up a lot. So discouraged!!!!! I can't seem to have any treatment last more than a few months. At this rate I'm really going through treatments quickly!!!! Asked to move up my scans. They're scheduled for the end of the month. Waiting to hear. And to add insult to injury I took a bad fall walking home tonight and my left wrist hurts sooooooo much. Am at urgent care now. Feel like crying and getting in bed!!!!!
Babs
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So sorry, Babs! I hope you get the scans moved up and get a treatment going that works and lasts!! Maybe the scans will be better than the TMs??? Maybe!
Hope your wrist is ok. What caused the fall? That kind of stuff gets scary!
Gentle hugs and big prayers!!
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Kaption thanks. I wear Skechers and sometimes they just hold the ground and then I fall. Ugh!!!! Just had X-rays taken. Waiting for the results
Babs
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Babs, What a day you are having! No wonder you want to crawl into bed and cry. First of all, I hope that your wrist is okay. I am sorry your good visit with your MO took a bad turn when your TM results came back. I know it is discouraging, but I am praying that your scans show no progression and that the higher TMs are just a meaningless anomaly. You have been through so much, yet you continue to be a positive source of support to all of us here. It is your turn to lean on us. I know it will be hard waiting for the scans and results, but remember that we are here for you.
Hugs and prayers, Lynne
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Sending strength & all the healing vibes and good juju I can to you, Babs. Not at all fair what you're going through tonight. Praying for good news, starting with nothing being broken. Keep us posted. (((Hugs))) and prayers. Deanna
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Babs, hoping your wrist is ok. Praying also for your scans, this last PET I had showed only a few spots real active but overall things were better, but my TM's were up!!! Who knows with those things! Praying it's nothing...sending you gentle hugs
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Praying for all of you ladies that have had a bad week thus far.. Hang in there things will get better.
Hugs and prayers,
Ronnie
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Babs, I'm just hoping it could all be "residual stress" that caused those markers to go up. There's a definite MIND/BODY connection, and all the stress of the wedding, whether you consciously recognized it or not, could have taken a toll and produced an anomaly that could calm down with time.
As others have said, not all MOs put significant stock in TMs. They rely more on scans. Of course, that doesn't do anything for your anxiety and concern at the moment.
Go ahead and cry all you want...it does indeed help. When I messed up my shoulder over a month ago, I had a good cry, for sure. I still don't have full range of motion yet. Guess it'll take time. We don't need anything else added to our plates when we're already dealing with St 4 cancer!
Holding you up in prayer.
L
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Thank you all. My wrist isn't broken It is badly bruised and my ligaments are a mess. Icing it all night and have a brace too. Ugh!!!
As far as my TMs. They have always been right on. I'm hoping this time they're not! Hoping to get my scans moved up to reduce my stress level
Babs.
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Babs - Crying and going to bed is a fantastic plan. So is moving the scans up. So glad you have no fracture to deal with, but the TM increase is quite enough.
It looks like you started Taxol fairly recently. TM's can rise in response to a drug working, especially early on. It's called a flare reaction. Basically the dead cells cause an increase in the antigen. Even though your TM's are generally accurate, a flare reaction could be going on now.
>Z<
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I am following Lita and Z and Deanna and all of their excellent words of encouragement and hopeful perspective. Hope you wake up and the ice has done a good job of reducing the pain, and that you get near term dates for your scans so that you can know what's up. Damn tumor markers. Rest well tonight, as much as you can.
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babs. Glad nothing is broken. Nothing wrong with a good cry and going to bed sometimes.
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Babs you and I need this Taxol stuff to work just had my first infusion yesterday not doing to bad so far. My onc doesn't do the TM thing Andy I'm kind of glad one less thing for me to sweat over. I'm going to agree with Lita and Z it's residual stress or it's the drugs working one or the other or maybe both. Mind body is huge and I need to get my mind in the game. I'm so glad your wrist isn't broken that's the last thing you need right now.
Managed to walk my dog around the block today the sun was shinning and I refuse to let cancer take that away from me . So forcing myself to eat (yuck) to gain some weight back . My husband has turned into the big hoverer "Are you hungry? Can I get you something?" All I want is water ...
I agree sometimes crawling into bed and having a good cry is therapeutic but set that egg timer and get back in the fight when you feel better. You have many who love you and care . We got this together we are strong
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hey I was on here a couple of days ago asking for advice. As expected I did have some progression in bone. Not a huge amount but enough for onc to see aromasin was not working. I'm sad but I didn't get much time on the ai because I felt great. The good news for me is I am moving to ibrance with faslodex (only approved in uk) I'm grateful to have this as an option. My onc has only 4 patients on so far and only 3 weeks in and no one has been scanned so very new for us. I have to research side effects and want to expect but here good results for people here. I hear it take a while to work but onc is happy to go with this.
To the ladies facing chemo (I had Abraxane Aug to dec) I was very disappointed at time to do it but disease was spreading quickly. It was worth it. It worked very fast and I had very good results with areas reducing. I got an excellent real hair shoulder length bob. The quality has really improved since my original 2012 number. Even friends haven't realised it's not my own. Best of luck on new treatments and continued stability to everyone else.
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Oh Babs - sorry about your wrist but thank goodness not broken. Still, I'm sure it's painful. Here's hoping your TMs don't tell the truth this time. Nothing like a good cry and a pity party once in a while and then onward and forward.
Wendy - Congrats on first chemo session. I'm so glad they took you in right away.
Lily - Bummer on small progression. Very excited that Ibrance has been approved in the UK and that you can get this tx!
Sending hugs all around
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Babs~ I know the feeling, And iam sending prayers and strength of hugs. I really hope your wrist is ok. We all know you don't need that. Everyone I know Is falling. My mother is still in the hospital from her fall and broke her arm. So please take sometime to be good to yourself and know you are in all of our prayers and thoughts!
Wendy~ hope the chemo kicks the crap out of the crappie cells ! Always thinking of you.! Stay strong as you always are! 💜Purple for hope!
~M~
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Waiting to get my second set of tattoos for radiation, which will star tomorrow. Ten sessions of 300 rads each. RO is confident I should get up to 80% relief.
But be SURE to keep the imodium and depends on hand. 😣
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