Bone Mets Thread
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carpe diem,
I cruised AUS and NZ last year. Both countries were wonderful and I'd gladly go back. Have a wonderful time. I'm cruising Alaska in June
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Carpe_Diem - I work in Wellington, not far from where the cruise ships dock! Maybe we can have a coffee? I'll PM you with my email addy. The weather in April is either stellar or crap.
Think San Francisco - layered look. It can get quite warm during the day, but chilly to cold at night. And the weather can change in mere minutes. I'd advise rain gear and layers. Wellington itself never gets all that warm; we're on the ocean so there's almost always an ocean breeze (or gale) which keeps it cooler. So...tee shirt or tank top with a light-weight cardigan with a rain jacket is probably about right. That's so exciting! If you want any info or anything, let me know!Terre
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Happy Sunday or maybe Monday for some of you! Just wanted to drop in and say "hi", and send good wishes and healing energy to all of you having pain or other struggles right now. And thank you, all you photographers. The pictures have been breathtaking!
I have a question about the palbociclib that Pfizer is on the verge of getting out. Everything I've read pairs it with letrozole (Femara), but I'm wondering if anyone has heard of it being paired with anything else, like another AI. I was on Femara for 6 months after my first 3 years of tamoxifen, and it was ok for 3 months, but then got brutal. I was miserable physically and mentally, and I didn't know that it was the Femara because I'd been fine for 3 months. I finally put 2+2 together (that's why I teach English, not math!) and stopped it. I went on to anastrozole (Arimidex), and in a few days started having similar physical side effects. I went back to tamoxifen after that. I declined to try Aromasin at that time, but I've been on it now for a couple of weeks with no issues. So I'm wondering if this new drug will be an option for me if it has to be paired with Femara. If I could only take it with Femara, that would be a heck of a choice to have to make since I have such bad SE's with it.
The other question I have is regarding Protocel. Has anyone tried it, or is anyone taking it now? A doctor friend told me about it years ago, and when I was originally diagnosed, I ordered a bottle. When I talked to my friend again, he kind of backed off and told me to wait until after surgery to take it. He said the formula had been changed, and he wasn't so sure about it anymore. I had my surgery, but then never took the Protocel. Just wondering if anyone has any info or insights on that.
One last thing. I had my first injection of Xgeva a couple of weeks ago, and I swear the arthritis I have in some areas is better. Can it have that effect? Nice bonus if it does. I've cut way back on ibuprofen, so something seems to be up. Not complaining!
Thank all of you for being here to share your ups and downs. The mutual support and compassion is wonderful. Have a quiet evening and a great day tomorrow.
Sharon
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I am struggling trying to wrap my head around my DX yet. I will just be watching TV and my mind will just "go there". I know I could live for many years. But I am having a really hard trying to stay positive. I think I may need to see a counselor. I have my third infusion Wednesday, I know I'm having a good response to the drugs as the tumor that was palpable is gone. I am supposed to have some sort of a scan sometime after this infusion. How do you accept This and move on? Or don't you...
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Sharon,
Do a search on the alternative forum. There is one, possibly more, threadon Protocel. Protocel has also been marketed under other names such as Cancell and Cantron. I believe there are a few women on bco who have used it.
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Carpe diem, I am so jealous. Have a great time, and I hope you get to meet up with Terre. Terre, what kind of meds were you taking before celebrex? They just tossed what I consider to be some serious narcotics at me. At first I didn't use them regularly. I hardly used them at all when I was doing my experiment. Wink wink. I definitely use them now. Every single bit. So I'm concerned about the addiction problem. So, I'm wondering if Celebrex is something I should even consider.
Tomorrow morning, 8 am, I get to check mom in for her flight on Tuesday. We are anxiously watching the weather. New York is supposed to take a pounding, but we are only threatened with 1-4 inches. New York is not that far from Baltimore-Washington. A shift in the weather pattern and BWI will close. This just can not happen. I need these 2 weeks without her. She needs these 2 weeks away from me. Deep breath. Whatever will be, will be.
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Dune - fingers crossed for the weather! I know the "need a break" feeling.
Celebrex is an arthritis drug, non-narcotic. http://www.drugs.com/celebrex.html
The down side is that it's been linked to heart problems and I've had lots of rads on the left side. So they monitor my heart pretty closely. The up side is that the heart problems don't seem to manifest until most people have taken it for several years I was on ibupropen, naproxin, and a synthetic opioid (sp). Ibupropen worked for about 8 months. Naproxin worked for about 3 months. Fingers crossed, but I've done Celebrex for about 7 months and it's working really well. That said, I have arthritis everywhere and the Femara just makes it worse. So I honestly don't know that I have any cancer pain, per se. My spine where my mets were gets sore as does my hip. But the biggie is my knee, which is 100% arthritis.
I know there are some studies out there on addiction to pain killers and I know that it's not as big of an issue with many of them as one might think. My MO said that if things get really bad, he'll put me on methodone. I know they've had a fair amount of success with it. But I'm hoping that's a long ways away for me.
Sharon - I read that they're trialing palbociclib on its own without Femara. You may want to look into that. It's the next wave of trials for it, i think.
Hugs to all,
Terre
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Hi Ladies, Been following all the frustrating and really debilitating painful days that are sticking around....grrrr. Just a few thoughts that may allow a little time away from the "nasties". Back when I did some teaching at a regional arthritis facility, included in pt treatment was the strong inclusion of diet changes to modify side effects......pain etc that were results of radiation and some meds. Water therapy was always a consideration.....and very successful. I thought about perhaps including some diet tweaking and the wonderful warm water treatments in addition to the ongoing onc txs. Think I will check it out soon. Cancer takes away so much control in our lives. Darnit..I am going to take some of it back. If if can dig up some relevant diet info...I will post back. Started. Xgeva last week and wondering when the fatigue and nausea "knock it off"
Gentle hugs, Peggy
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Hi Peggy! Welcome back - haven't heard from you for a while. Hoping for pain relief for all and looking forward to your suggestions, especially for arthritis pain.
Hugs to all,
Terre
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Good morning ladies,Sharon - regarding Protocel. Musiclover takes it and she posted on this thread about it a few weeks ago. I ordered it and decided to ask my pharmacist before taking it - should have checked with pharmacist before ordering!!! Anyway, my pharmacist did a research on Protocel and checked interactions with all my medication. She said there were no clinical trials done, ingredients differed from one site to the other, it's not approved by the FDA or Health Canada and there is very limited information on the product and Protocel says it should not be taken concurrently with cancer treatments. Of course, she looked at it from a scientific point of view based on hard data and I don't know where she got all the info. She did tell me she consulted with a colleague pharmacist who works in oncology who recommended that I not use the product. But the reason I decided not taking it is because it interferes with my personal profile of meds such as synthroid. This is just my personal situation/decision and I am not trying to influence anybody. When taking supplements of any kind, I always check with her.
Wishing everybody a great day. - Linda
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no flames, please, but I am definitely a doubting Thomas. Although I would like nothing better than a cure/tx for bc that did no harm to the rest of my body, while killing bc, there seems to be little more than anecdotes to support the use of Protocel. It also claims to cure several other maladies, which is always a red flag for me.
http://www.cancer.gov/cancertopics/pdq/cam/cancell...
Still, everyone makes their own choices and if it gives hope and makes you feel better, then that's what some choose to do
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Annie, so sorry about your hubby. His back issue sounds excruciatingly painful. I sure hope he can get a fast appt. w/a neuro doc who can help. Did whatever they did in the hospital help at all? Hope so!
carpe diem ~ What a fun trip to look forward to, especially if you can meet up with Terre! I'm sure we all would love a pix when you do! Caryn, too bad you missed it by a year!
Carla, hope you're still doing well. And Valerie, thinking of you this a.m., as well as Annie and Linda anyone else who has been dealing with too much pain. I like Peggy's ideas of warm baths and possible diet tweeks. My pain has been much better since eliminating animal protein and wheat. I happen to be wheat intolerant, but many other things cause inflammation, as those do for me. It can be a very individual thing. And I've probably mentioned it before, but curcumin also helps me with pain, probably also due to its affect on inflammation.
NineTwelve, good luck with the zometa infusion today!
For those of you in the path of the storm, hope you're all stocked up and able to stay indoors today with no looming medical appts to worry about. Stay safe!
In spite of the challenges, I hope the week holds good things for everyone! Hugs to all, Deanna
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Thanks for your comments on Protcel Linda and Caryn. I have done some research on it, and I know it has no credibility in the medical/science community, but I was curious if anyone here was a believer. After I ordered it years ago I started to receive calls from a woman somehow related to James Sheridan, the man who first formulated it, and she told me many stories about others' success with it. She didn't pressure me, she was just on a mission to spread the word. My recent research indicated I couldn't do any hormonal therapy if I used it, so I'm not going that route. Terre, I agree that it raises many red flags when something says it can cure a wide variety of conditions. I think I'll stay away from that.
I think I did read something about using palbociclib without Femara, but it didn't seem to work as well. I guess I'll have to see how things develop in the trials.
Peggy -- I started Xgeva a couple of weeks ago, and I had fatigue for about 5 days. I felt much better after that. I didn't experience the nausea, however.
Regarding diet, I have serious arthritis, and that's my only pain at this point. Ibuprofen still works for me, but I have found that really cleaning up my diet has been very helpful all the way around. NO SUGAR, very, very few carbs, some pasture-fed meat, no farmed fish, lots of vegetables (preferably organic), though I avoid the higher carb ones. I was doing this loosely before this dx, and now I'm much more strict. It really helps, and I'm losing weight steadily, which I need to do. Today I meet with the dietician at the cancer center to hear hat she says about diet. And getting into warm water is great. The gym I used to go to had a cooler lap pool that I used at times for swimming, but I'd water walk in the warmer exercise pool, and finish with a few minutes in the very warm whirlpool. It was heaven for my arthritis. I quit last year because my knee had gotten so bad I could barely do the swimming and water walking without pain. I finally had my knee replaced and thought about going back, but my insurance covers a gym membership as of January 1, and my old gym isn't on the list. My next choice doesn't have a pool. I'll try it, but may end up going back for the pools. Warm water is a great friend if you have joint pain. My worst arthritis is in my lower spine, and it's bad there. When nothing else helps, I use a heating pad there. It seems to relax the muscles that tighten up because of the arthritis pain.
I also started reiki at the cancer center last week, and it was amazing. It actually helped my back pain and relieved the tightness in my shoulders, and the relief lasted a good while. With arthritis, some of the pain is in the muscles around the area that are working hard to protect it. When you get them to relax it helps sometimes. I was totally relaxed with the reiki, physically and mentally. Really helpful, and it's free to the patients at the center.
I'm not in the path of the big snowstorm today -- the east is getting it much worse this winter than here in the midwest -- but I'm ready for a field trip down under! Carpe diem, can I come along and carry your luggage?? Sounds like a great time.
I hope all of you in pain have a better day today. If you're out east, stay in and be safe!
Sharon
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Terre,
Thanks for the advice on weather and clothing; local knowledge like that can really make a trip more comfortable and meeting you in Wellington would be just perfect! Sharon's offer to carry luggage is certainly tempting, since I'm on my second bout of rotator cuff tendinitis. Apparently having mets on the shoulder blade doesn't leave much support for all those muscles and it's pretty easy to yank it the wrong way. I'm seeing a physical therapist on Wednesday to work out a plan for getting back in shape. Meanwhile, I do appreciate that warm pool at the Y for water aerobics, since it's hard to get out and walk around here when it's 18 deg F and snowing. We're out of the major path of the big storm, but it looks like we'll get 4-6". I'll just sit by the window and watch the flakes float down and dream of early fall in New Zealand.
Janet
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Hi all!!
I went to get my blood work done today & it is still extremely painful to get the needle thru my port. Has anyone else had this?? About an hour prior I put emla cream on with one of those big clear bandages they gave me at the hospital. I am not a wimp when it comes to pain, but this is getting ridiculous. For about an hour afterwards it was still stinging.
Also I seem to be allergic to all the nice clear bandages they put on you, does anyone have any suggestions for allergy free products?
Hope everyone in the east is OK, I saw on the news that there was a horrific storm coming, up to 2-3' of snow?? Holy moley, keep safe everybody!! Thanks! Dee
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When I use EMLA, I cover it with plain old plastic wrap, like Saran, and paper tape. The Tegederm makes me red and itchy. Sorry that accessing the port is still painful
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Tegederm, that's the one they gave me last time, so this time they gave me something else & it was even worse. I will try saran wrap & I'll go get some paper tape tomorrow. Not sure how they will keep everything together on Friday for my infusion, but they aren't using any more of those 2, I'm tired of having a red blotchy chest. I don't understand the pain nor does the RN. But thanks for the suggestion Caryn! Cheers, Dee
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gg27,
When the actual needle is in place during an infusion, they just covered it with gauze and paper tape. Any of the other stuff made me itchy and red, including regular band aids. This only happens at my port site and no other place on my body. Go figure
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I had similiar probs to hubba Annie and I got 2mgs Dilaudid every four hours for pain. The decadron made me pound in my arms, kept me awake and crying. Went into TufTs for pain mgt. Dilaudid was a God send. Much love to you and your family.
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exbrnxgrl, same with me, they can use the tegederm on my arms etc & no reaction, but on my chest it flares like you wouldn't believe. When I had my recon, I was a red rashy mess from the dressings. I will tell them just to use gauze & paper tape. But I don't know what I'm going to do about the needle insertion. Thx, Dee
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Dee, I would try piling the Emla cream on, cover with saran wrap & then have them use that spray to numb b4 they access the port - might work.
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Had my first solo treatment yesterday and saw my MO. He jokingly thanked me for having such good bloodwork. My TM was 43! (I asked how high that number could get and he told me he had seen it as high as 8000).
So, good visit, overall, and I got to tell him that I have practically NO pain at this point (well, except for my arthritis twinges in my thumb and big toe.)
Here's a strange question: does anyone else feel sleepy during the port flush part of their treatment? For some reason, I always feel a little woozy and tired while that's going on. It's only the flush and then Zometa, so it's not a chemo reaction.
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As I expected, more progression noted on MRI of thoracic & lumbar spine; every vert in thoracic affected & known areas have enlarged. RO said if CT shows worsening liver mets then I'll be in for a change of tx - that's tomorrows adventure.
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Great news, NineTwelve! 43 has a wonderful ring to it!
Not so great news, SyrMom. Let's hope & pray tomorrow's CT results are better. If not, a change of tx sounds like a good thing! How long have you been on whatever you're on now?
(((Hugs))) to you both!
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Great news, NineTwelve!
SryMom - I am sorry to hear your not great news. Sending hugs and good thoughts your way.
I'm off for my CT scan this afternoon.
Take care all,
Terre
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Hello to all,
SyrMom, sorry to hear of your news, also praying your CT results are better. What has your current treatment been? Hoping CT results show improvement or stability!
NineTwelve, great news on your tumor markers. I'm so happy for you. I as well today found out from my family doctor that last months tumor markers dropped from 53 to 22!
Terre, praying for NEP or NED would be even better. Thinking positive thoughts for the best results!
Dee, hoping they figure out a way to make that less painful for you!
Thanks to all of you for wishing dh well. He's slowly but surely getting better. It will take time I guess. But you know men, zero patience.
Hugs to all, Annie
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Hi all,Ninetwelve - good news on TMs. SyrMom - good luck with tomorrow's adventure. KWC - hope your scan shows NEP or NED!
I saw my Onc today, the suspected met on L1 turns out to be arthritis. Never thought I'd be so happy about arthritis! Regarding Dr. Incompetent (radiologist who was totally wrong), I asked my Onc if he was still around - and yes he is! When I told my Onc I don't want him involved in my file, she said that was a bit hard to do (medical mafia in my opinion) but she gets a second opinion on every report she receives from him. That's why she sent me to ortho because she did not trust the report. Frankly, at this point I don't care about their internal politics as long as she's on top of things. I will not waste energy on Dr. Incompetent. My breast TM is down to 9 from 10 last month (was 21 at dx). My calcium levels are back to normal but the kidneys are borderline insufficient so Aredia will be reduced from 90 mg to 60 mg and see what that gives. She ordered at CT scan of chest and abdomen for February and check that "vicious" little met on rib at the same time to see if rads could help for pain. An MRI will be ordered if scan is not sufficient. So all in all, good news. I'm quite happy.
Deanna - I asked for a patch for the pain but she says that my current pain meds vs pain relief is not enough to have a Fentanyl patch. You mentioned lidocaine patch?
Hugs to all - Linda
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PET/CT in the morning. TMs have been going up a lot. I don't expect good news but I hope it's not too bad.
Leah
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Had 2nd Treatment of A (Red Demon) My tumor markers have gone up from 3wks to 187 from 100 still on Faslodex which I get next mth...I was asking my NP who works aside my OC a lot of questions about other meds for se and about this treatment...felt good to do so...she gave me reassurance...
I don't have any issues with my port...I go in cold turkey every time...never had to prep prior to treatment...I guess I got tough skin...I'm sorry for some of you that have issues with that...I heard that alot at the clinic today too..
I can't believe April 1st it will be 1 yr since this dx...so much to be thankful for...just being here...
Had some scary news regarding my 10mth old grandson...he has signs of Bells Palsy....Daughter noticed it when he would cry...his left side of face would droop...so took him to be seen and the doc's said early signs...but treatable with steroids...low doses...about 9 sessions..but will have MRI to rule out any brain trauma...tumor etc...but he is still his adorable self...playing...laughing and smart as a whip...I just can't see something like this heaving my daughter right now...
Have a great evening...the couch is calling me to rest...L&R Carla
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Linda, yes -- Lidocaine patch. It's an RX, but not an opied like Fentynl. I also bought some lidocaine cream when I was low on patches, and that didn't help at all. But the 5% patch was a saving grace when my rib pain was at its worst. And great news on the spot being arthritis. (I know, it's so ironic and almost silly that we congratulate each other on arthritis {even RA}, liver hemangiomas, artifacts from past lung illnesses, and who knows what else -- anything but more bc!!)
Carla, darn those tumor markers! Hopefully your second dose of Adriamycin will stop them in their tracks and get them headed in a downward direction! And glad they caught your grandson's problem early! (I just had to read up on Bells Palsy. Thank goodness it sounds treatable!)
Leah, you will be in my prayers! From what I've read, Israel is on the forefront of breast cancer research and tx. Hopefully, you're getting great care there!
Anyone snowed in tonight? Deanna
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