Bone Mets Thread
Comments
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Babs, that doesn't sound terrible to me...just a few spots, hopefully gemzar will affect them quickly
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Wendy,
Ask for a liter of fluid along with your infusion, and to slow the drip rate down by at least 35%. The fever could be from steroid rebound - I used to get it reliably when I did a year of Taxol. Try 25 mg of Benadryl - it shouldn't help, but it does!
If fasting proves too horrible, continue with the ketogenic diet? Newer studies are pointing to low blood sugar levels being as efficacious as fasting, pre and post chemo. If you do keto, watch out for constipation.
Keep an eye on your hemocrit. Even if you are within low normal ranges, if that isn't what your body is used to, it can feel awful. Fatigue, malaise, muscle pain, shortness of breath. Anemia is no one's buddy. Adding low dose iron supplements, and/or eating grass fed red meat will help. There are vegetable sources of iron, but they aren't as bio-available as red meat. Prunes rock, and help deal with low intestinal motility - if you catch my meaning.
Hoping you are feeling better! Taxol can be so effective - I hope the ride gets easier.
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Thanks ladies for all your suggestions and good wishes. Today's chemo I refused all pre meds and asked for extra saline. So far so good a lot more energy and I feel pretty good. Z I'm doing an vitamin c infusion next week Wednesday to help the Taxol the reaction at the hospital from the nurses was interesting don't do that that would be really bad. There is such a disconnect between modern alternative (proven) therapies and the ensure and centrum they offer at the hospital.
Babs I know what you mean about blowing through therapies , your scan doesn't sound so bad no big surprises which is a wonderful thing. You and I need to get something working for us for a good long time.
Linda I'm sure they will figure out what the deal is with the slurring. I imagine it must be a pain in the butt. How's your puppy doing?
We are a bunch you know. So funny when I repeat something I learned from you ladies to,the nurses they are like where did you hear that . I tell them from my dear friends on line😉
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Hey Wendy, good to hear you're feeling better this time. Just my two cents for what it's worth (and not very knowledgeable in alternative tx) but I always heard that Vit C is a powerful antioxidant which may counteract the benefits of chemo. Doggy doesn't care how I speak, as long as she gets her treats LOL!
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50sgirl- back pain is better unless I sit for awhile. Have had a daily headache that scares me. Any new pains scare me. It's a crazy way to live but it's what it is.
My niece had a breast biopsy yesterday and they forgot to put the little marker in. Not sure how it would work now if it is cancer and she wants to choose a lumpectomy. Major mistake.
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Dianarose~ I have headaches a lot. I have come to the conclusion that it's my hormones. The anastrazole or any hormonal changes can cause headaches. Back pain and headaches are the two largest side effects. For me also, I was forced into menopause immediately after surgery. That also is hormones raging around trying to live in an environment that it isn't welcomed and has special chemicals targeting against estrogen! That's bound to cause some havock in your body. I also get some wicked back pain!! I hope we all wake up, pain free and some days I just want to say. I don't have cancer! How I miss those days ! Always praying for us warriors! ~M~
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Linda - In theory, vitamin C protects cancer cells and non-cancer cells alike from oxidative stress. There is one study that showed that Vitamin C did interfere chemo. It's a very specific chemo (not taxol). But in practice, Vitamin C has shown benefit in certain settings: studies and a lot of experience involving the other chemos show have demonstrated the benefit Vitamin C. The people who deliver standard of care are, as a rule, uneducated in complementary approaches. This doesn't stop many from holding strong opinions. There certainly is a disconnect. The truth is that combinations of treatments have long been proven the most effective against cancer.
Wendy - I am so glad to login this morning and find you are doing better. Good job getting what you need, despite feeling like crap. Not easy. You are very tough.
>Z<
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Hello ladies, I am back on this site after a 7 year hiatus. Seems I have multiple mets to my bones. PET scan and MRI done. Bone biopsy next. Feeling terrified and overwhelmed. Won't know treatment until after biopsy. Onc thinks it will be falsodex and Ibrance. But, I may get chemo. Time will telll.
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JFV, I'm so sorry about your very recent re-dx. I'm curious what led to a PET scan? Were you having pain, or was it an accidental finding? Either way, after so many years, it's a surreal shock that we all here -- whether we recurred like you or were dx'd de novo -- understand. (((Hugs))) and I'm glad you've come back to BCO and this thread. I know you'll keep us posted on the results of your bone biopsy, and if Faslodex + Ibrance are in your future, it's an excellent combo that many of us have been on with great results. Here are a couple of other BCO discussions you'll want to check out if Faslodex + Ibrance is RX'd for you. Deanna
https://community.breastcancer.org/forum/8/topics/...
https://community.breastcancer.org/forum/8/topics/...
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Welcome JFV. We've all been terrified and overwhelmed. It's a set of feelings that accurately reflect the news you just got. We've all made peace with our situation and many are doing very well. Bone mets are a very slow cancer to develop and you should be fine. However, there is no way around the fear and sense of loss, you just go through it.
Check in frequently, let us know how your doing. A lot of experience on this thread.
>Z<
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Wendy~ so glad to see you here today! Also glad to hear you're kicking some taxol butt! I learned most of my tips from my oncologist nurse/assistant and she has always been really open and frank with me about things, and you wonderful ladies here! One issue I had was Constipation While on taxol and or abraxane, wondered if they are giving you anything to prevent that animal. It's either diarrhea or constipation! I had the latter, murilax is the bomb. lol literally, the other thing I thought was awesome to learn was, when you have to take a CT scan, that awful white hand lotion tasting crap we have to drink for the scan, add chocolate or strawberry syrup to it. Not a tremendous amount, but a few teaspoons help a ton! I have done it now four times and it worked like a charm. Without it, I just couldn't swallow it, I kept gagging. Keep on trucking Wendy. Keeping everyone in prayer! ~M~
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Five rad trmts down, five to go.
My bodyguards waiting for me outside the radiation clinic...
the roses to the right are a gorgeous, golden yellow...
best I could get with my little tablet. So there's at least one positive thing about going every day...I get to see the roses!0 -
Lita - I am so glad you have that wonderful husband and dog to brighten your day ... and roses too!
Keep going!
Any improvement yet, or is it too early.
>KNC<
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Actually, more pain, Z .
Saw RO today because it's the halfway point. She said the tumors may get inflamed at first. It could take weeks after rads to know how well it works as things heal.
Thanks for asking 😀.
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Z - thanks for clarification. Good to know. I knew you'd have the answer!
JFV - Welcome to this thread! Best place for support and info.
Lita - Hang in there. I remember my first round of rads, the pain got so much worse until it got better.
My latest update: Brain scan is clear. Neck and chest stable. Brain MRI is requested to further investigate tongue swelling issue. Saw my dentist today to get her opinion, she sees nothing wrong in mouth or on tongue other than swelling. She is referring me to a maxillofacial specialist that I will see next week. Had a bone scan today, only test left is abdominal ultrasound.
Mommall - where are you? Would love to hear from you.
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Lita, I got so happy seeing your photo, DH and I had an English Bulldog (Sarge) who passed away a couple of years ago, he was the patriarch of the pack and we have one 13 year old baby boy left. Sorry, I know this is not the dog thread but here's Sarge.
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LindaE, I am glad that the brain scan is clear and that chest and neck scans show stablility, but it must be frustrating that you don't yet know the cause of your continuing symptoms. I hope the MRI is done soon and that those results and/or input from the maxillofacial specialists can give you answers
Hugs and prayers from, Lynne
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LindaE, glad to hear your scan was good! Now to find out what's causing that!
Lita, hoping you get relief quickly too!!!
JFV, I was clean for 9 1/2 years and mine came back in the bones too and was extensive. It is hard to hear that it's back but these women are great supporters and friends.
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JFV, sorry that your cancer has set up shop in your bones, mine did too after 7 years. Glad you found your way back here, lots of support and great tips.
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Illimae, I bet Sarge was pretty healthy. With longer legs, he probably had more stamina. It saddens me when breeders breed them to be SO stocky across the chest with short little legs.
The original English bulldogs from the early 1800s actually looked more like Sarge, too. Breeders in England started breeding off a dog named "Dockleaf" who was actually a dwarf bulldog (regular head and torso, but squatty, short legs) because they liked the look. Unfortunately, that has resulted in a lot of health issues for them over the years.
There's your bulldog trivia for the day. 🐶
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Lita - I find it very interesting (amazing?) that you are in pain yet your energy on this thread is so consistently positive. You must have wonderful support in addition to being very strong. Chronic pain brings most people to the edge. I've been dealing with hip pain this week and I have not been very happy with my personality. I am getting bette. I am confident that eventually you will turn corner and start getting better, too. The inflammation caused by the rads is sure to cause pain, but it's getting rid of cancer. So hang in there...
Linda - I am very glad that your scans were clear. The slurred speech is disturbing but probably much easier to handle knowing that the cancer is not the cause. Let us know how things go. I am also glad to see you are leaving no stone unturned in trying to figure out what is going on ... staying well is quite a bit of work.
Mae - every thread is a dog thread. Unless it is a cat thread. What would I do without my kitties ... Shetland seems to think I don't rest, but my kitties are Olympic level napping coaches and I've gotten pretty good at it.
>Z<
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Linda, that is great news about the brain scan! They will figure out the slurring soon I am sure.
Wendy, I'm glad to hear the extra saline helped. With all of the other tips everyone has ben pitching in I think you will soon be on a more smooth and stable trajectory. You are dealing with so much right now. I'm thinking of you and hope you are feeling way better soon.
Lita, I LOVE the bodyguard pic. A couple of handsome dudes there. Those dogs are awesome and probably brings you a lot of comfort.
babs, sorry your scans weren't what we all hope for but it really doesn't sound too dire. Hope the next Tx works wonders for you....
Dianarose, hearing about medical mistakes makes me CRAZY!!! Aaarrrrggghhh......
Yes micmil, we all miss those days for sure. How much I took for granted. This anastrozole does have a few SE's that seem subtle at first but now seem chronic and wearing. Mine is mostly all over joint pain but also occasional pressure headaches.
Interesting debate about Vit C.....
Welcome JFV!
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Treadmill stress tests today! Wish me luck
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Good luck Gracie!
>Z<
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I'm due my third Denosumab injection next week and have been taking Adcal D3 daily for the past 8 weeks. Within a week of the first injection I started with an upset tummy, loose bowels after most meals. This has been non stop regardless of diet etc. My Oncoligist recommended stopping the Adcal, which I have done on Monday. Have any of you had this problem with Adcal and if so how long after stopping it should my bowels take to get back to normal if it is a side effect? I am a little worried to be hones
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Thank you for my welcome Ladies. Now I realize my mets have been talking to me for a few months. My exsisting sciatica has worsened. I was also diagnosed with CVID recently which is an immune disorder. So my other symptoms of fatigue as well as aches and pains were being blamed on that. In the last few months I would have a few days where everything in ached. I went for my 6 month check with my oncologist And my bloodwork showed elevated tumor markers
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Hi All
Just heard from my MO. She is suggesting a phase 1 trial of P13K inhibitor with or without nivolumab. Does anyone know anything about this?
Babs
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Z, yes, the pain is ever present, but there are so many here who are dealing with way worse pain than me. We are here to support each other and lift each other up. I can do that from my La-Z-Boy with the massage unit going full blast, and pain patches on my leg...as long as I don't have to walk or stand too much, I'm learning to tolerate it. What else can I do?
Hoping everyone has a little LESS pain today.
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Lita - wishing you a quiet day in the lazy boy. hang in there.
Keep us posted.
>Z<
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Hey Babs - My best guess is that you are being asked to consider this trial
A Dose-Escalation Study to Evaluate the Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of IPI-549
Your doctors are excited because the first phase of the phase I trial reported results earlier this month. The treatment is well tolerated and seems to be holding some very nasty cancers at bay. Only 15 people, but it's good to know you are not actually the first one taking this pill.
Nivolumab is Opdivo, an FDA approved immunotherapy that has been changing the game for melanoma and lung cancer This FDA approved PD-1 inhibitor is tested and well understood. IPI-549 is a new, experimental, PI3K inhibitor. As a class these drugs have shown some efficacy on cancer that expresses PI3K; however, the reason why they are excited about IPI-549 is that it has been shown to overcome PD-1 inhibitor resistance.
Basically, immunotherapy sometimes knocks it out of the park but mostly does nothing. The research is now focused on why these immunotherapies fail. IPI-549 is hopefully a way to improve the outcomes we get from immunotherapy drugs like Opdivo, in addition to directly inhibiting cancer growth through PI3K inhibition.
I like this trial. I am excited for you. I hope you get both drugs, because that's were the interesting outcomes will be. But I not sure I found the right trial. This is the only Nivolumab/PI3K combo trial led by MSKCC I could find
Very interested in your decision process and discussions with your doctors. You have access to the best of the best research MD's... many of us, alas, do not.
>Z<
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