Chemotherapy for Stage IV
Comments
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Glenna, where is the address book located?
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Hi ladies
I need an advice about my mom. She has been diagnosed with mets in the whole skeleton. She also broke her hand and has a large lesion in her hip. She has been started on tamoxifen. Today I talked to her onc and she said that they cannot start her chemo since she has a low blood count (they did a transfusion recently). I thought chemo is only started when tamoxifen fails (mom's can is both rec positive). Did they decide to start it sooner because cancer is so aggressive and present in so many bones? Shall I push them to start it sooner? How do they check if tamoxifen fails, especially if she just started it 2 months ago? What shall I be pushing doctors to do?0 -
Hold on to Hope - here is a link to the address book.
http://community.breastcancer.org/forum/8/topic/709156?page=2#idx_47
If this doesn't work, it's also been stickies by the mods on the stage IV forum. It's about the fifth thread down.0 -
Nataliya, I would get a second opinion if your mom is willing to do that. Don't know where you live or how hard that would be to do. How did they diagnose the bone mets? You mentioned in another post that her breast tumor from 30 years ago was not malignant. I do agree that she shouldn't have chemo if she has low blood counts. Have you posted on one of the bone mets threads? The gals there might be more helpful. Seems like she should be given something to strengthen her bones, but that is out of my realm. I do know that those with bone mets are living long lives even with stage IV so hope the best for your mom.
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Goodmorning,
Not sure if we will getaway after all been feeling really yucky but I'm okay either way. Glenna ..I will get my info to you today. I'm just a very private person and worry about the family getting overwhelmed when I pass.
@natalya..Hun I would definitely start a new thread and ask some of your questions. I agree with the advice Glenna gave you about a second opinion. The right oncologist is so important and do remember you are still in charge. In my opinion the right oncologist will always give you some kind of treatment. They don't like to give up..so if one is all negative ..switch. Just my opinion.
@soleil...lots of prayers and hugs coming your way my dear. Keep your positive attitude...this will work;)
Hugs to all
Kimber0 -
Thanks, Glenna; found it!
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Glenna E, Good luck with your next chemo. For sure get off that one if it can hurt your heart. If the doc says lots more options, well, you have to go with that!
I worked for awhile today, so full of steroids, I had energy Now I'm sitting here in a little bit of pain and a bunch of fatigue. Think I'll stay on couch rest of the evening.
They promised they'd call me today but I lost my cell phone. Oh no! I'll call over there in the morning, life is a cell phone isn't it?
Well, good luck and happy weekend to all!
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Wow...I didn't know there was a central address book. With that said...guess I'm not in it either.
Soleil - praying the SIRT works. Your description of how they do it sounds kinda painful...but then again...I'm a wuss. Keep us posted on when those beads come in and you get scheduled for the procedure.
Glenna - jes like Soleil getting this new procedure...don't ever give up. I kno it's scary, but without HOPE... Sounds like you have some fun and R & R planned. Sounds like fun. Will keep you in my prayers that your echo is good and you can continue your tx. Can you tell me where to find the addy book/thread?
I need a flu shot too...and I guess a pnemonia(sp) too. Have also been told that I should ask for a 'shingles' shot even tho I am not 60. Any thoughts ladies?
Kimber - I hope you get to do on your getaway to Little Rock. I am going to PA and then KY last 2 weeks of Oct. will meet with 2 other breasties. Am looking forward to it. Sorry to hear Laurie is having such a rough time, thanks for the update. Will say extra prayers for her.
And to all you beautiful, courageous Ladies....sending prayers and positive healing energy to all!
Love,
Sue
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Sue, here is a link to the address-book.
community.breastcancer.org/for...
If this doesn't work, it's also been stickies by the mods on the stage IV forum. It's about the fifth thread down.
I was born in KY .... What part are up you going to? Waking up this a.m. In Florida. Had a great visit last night with my college roommate that I haven't seen in 40 years ..... Off to my Mom's today!
Will keep you all in my thoughts and prayers!0 -
I put me name on da address link. Thank you goils for heading me in da right direction.
Glenna - I am going to Louiseville, KY. And, by the by...have an x-sister in law that is in Hagerstown, MD...dunno how close to u...I cud google...but widdle tipsy rite now. Hope u have a fab time in FL with ur roommate and mom.
Prayers and Positive healine energy...as always...to all my Ladies!
Sue
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Memasue,
Tipsy from chemo drugs or the fun stuff? LOL! I was born in Vanceburg, KY, a little town on the Ohio river. Lots of family still in the area. Enjoying my mom but Internet is sporadic at best so don't anyone worry if I'm not posting. Chemo on Wednesday was fine and I'm glad to be in a restful place!
Happy week, all!!0 -
LOL...from the fun stuff Glenna. Glad you are enjoying mom...have a great week!
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Hi ladies, nothing like just dropping away. Lots been going on. Our mountain house did sell and we are to close on it on the 24th of this month. We have people scheduled to come the 18-19-20 to get the furniture. We were going to sell with the furniture but they have their own so we donated it to people.
Last Monday, the 1st October, my white count was low that I only got half my normal dose. The neuropathy is getting worse too. Tues. woke up with severe back pain - none of my pain med would settle it. Called my oncology clinic on Wed and didn't get a call back until Friday afternoon with really no suggestions. I didn't know what to do so made an appointent with my pain management doctor thinking I could have a nerve block again. I also emailed my oncologist and apologized for reaching him by email but that I got no callback and didn't know what I needed to do. He got the message and called me Sat. He said he was very concerned about the sudden onset an the type of pain I was having and NO nerve blocks until I was scanned and we knew what was going on. I honestly think whatever has happened to my left thigh being swollen twice the size of the right one is related to my back.
Since my oncologist is leaving and he is referring me to a D.O. at the same facility, I decided I wanted a backup; someone I had touched base with in case this relationship didn't work out with the D.O. He did call and I have an appointmnt with Dr. Muss at the LinebergerCenter at UNC-Chapel Hill on Oct. 17th next Wed. I am scheduled to see my oncologist and get my Abraxane on Monday, the 15th. This is the same week they are to come move the furniture out of the mountain house.
When the oncologist called on Saturday, he was very concerned about my back pain. Didn't want me to wait until the 15th to see him but said I needed an MRI. My MRI is schedued Thursday, Oct. 11th at 6:30 pm. - that is an MRI of the lumbar spine with /without contrast. Last 50 minutes. Then at 9:45 pm I'm to have MRI Lumbosacral plexus with and without contrast and that last 60 minutes.
Help, I didn't not expect 2 hours in an MRI machine with this kind of back pain. Have any of you ever had an MRI Lumbosacral plexus???
I pray I can handle all of this - the MRI's this week and the treatment, 2nd opinion and people removing furniture the next week. I used to think I was strong, strong willed woman but this has sure taught me not as smart or strong as I thought I was.
Soleil, so thankful that your insurance came through for you and that so far things are ok. Please do come and keep us posted. You reached out so much to me when I first started posting, don't want to loose touch with you.
Glenna, well here is another one that is not registered in the contact list. Does it keep them in alphabet order? How would you find the one you wanted out of so many that registered? Hope you have a wonderful time in Fla.
MemaSue, guess we both learned something new.
Kimber, how are you? Do you think you are up to the trip? I was feeling good last Monday and wanted to go to Richmond to visit my daughter and family - then my back so not going to even attempt that 5 hour drive.
It is late and I need to close. Sorry I have been missing for a bit. The loss of Mary and so many others just became overwhelming for me and then we have been dealing with trying to sell the mountain house. We thought it was going to be a monkey on our back all winter, so thankful that it sold. We needed free of it. WHen I left medicine and we bought the pizza, sub, salad shop, we never got to take a vacation - we could drive there for an hour and get away from it all. It was a God send at the time - now it was a burden.
Have a good night, a good week. Hugs
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I have had multiple MRIs of back and of lumbo-sacral plexus. I would ask for additional pain meds f or the MRI or take as much as allowed about half an hour prior to scheduled time for scan. I got thru them OK.
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Naniem, So happy to see your post. I was missing you. Congratulations on selling the house. Whew. A relief.
Getting onto the contact list was quite easy! I should have thought of it earlier
I found the traveling pants girls and wrote to them. I'm hoping they can send those pants to my secret friend. Still waiting to see her write, I got the pants! I'd like to get them myself, actually. Would love to sign themI had the second phase of the theraspheres yesterday. All went well. I won't have the real real results until Nov 14th, but the actual opeeration was easy for me. The docs said its because my veins and arteries are very open. This is also why I am chemo resistant. Chemo is supposed to close them up to block the cancer. For some reason, chemo doesn't do that for me.
Well, the side effects are kind of a drag. Alot of nausea, terrible headache, some pain in leg and very tired. But what else it new? The therasphere nurse said I should go home and take a tylenol. I did not argue with her, I just thought, "Are you kidding me?" I went home and took an oxy. Much better.
So, my goal for today is just one walk into town and back and then try to catch up with some much needed paper work. I am so grateful to God for helping me get this treatment. I knew that without it I was pretty much in the soup. Not sure if I wrote this before but the interventional radiologist said that in the 5 years they've been doing the theraspheres , they've had only about 80 breast cancer patients. Somehow, this would be an issue to lobby insurance companies about. I have no idea of how to lobby , anybody?
If this operation works, it will last for about a year. Then I'll go back for another. Since, i only have one lobe right now, I don't have the kind of time span those with two lobes have. They can go back later for a resection, then another. Buying them more years
But I'm pretty happy with what I have right now. They said I can definitely try another next year and that was pretty good news to me.Mema Sue, you are very funny when you are tipsy ....what were you drinkin?
Glenna, How are you doing from your chemo? I wrote you when I was going crazy waitng for phase one.
Kimber, Did you have a wonderful trip? Bet its still warm down there. Our leaves are changing . Next week is peak. Its very beautiful but I miss the golden summer sun.
Spamgirl....hows that crazy low cal diet thing going?
Take care everyone!
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33 skidoo - don't dread the scans other than you know what it is like with a bad back laying on those tables.
Do have a question for you since you have had both - with my first scan at 6:30 and the lumbar plexus is at 9:45 - do they have to wait for contrast to travel to the nerves or is this just a scheduling problem at the facility??
Soleil - oh my friend, I am praying that this will work for you and that the wonderful thing is that it would last for a year. How wonderful that sounds and no wonder you wanted to try it so badly.
It is a DREARY, cool, damp fall day. Like yesterday I have turned lights on all over the house. I'm on a heating pad and have lots of Oxycontin and Oxycodone in my system. I just am not a winter person - do any of you have to use the light lamps in the winter? I've wondered if I need one.
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A light lamp sounds wonderful just about now.
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Just a quick one as my Internet here in rural Florida is sporadic, at best. Naniam, so happy you sold the cabin. Will be thinking of you next week and hoping the MRI's are not too bad for you. Glad your onc is taking a look to try to determine the source of your pain. I've had an easy time on the doxil til this treatment. Have a itchy rash in LOTS of places and it looks like hand and foot syndrome has finally decided to go after my feet. this is after me assuring my mom and sis that traveling would not be a problem for me so soon after chemo. I'm trying to grin and bear it without complaining but boy would I rather be at home in my own bed!! I've never used the address list to contact anyone so maybe Soleil can tell us that part of it. I did request contact info once but that person had not registered so wasn't able to get any info. I do think it's good that we have our contact info available to someone .... Even if it's not the central address book! Looking forward to this next weekend at my brother's in jacksonville beach and hoping my feet get lots better! It's hot at my mom's and she keeps her a/c set at 78. It's miserable!! Maryland fall weather sounds pretty good right now!! Hugs to all!
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Nam - prayers that the tests go well for you tomorrow. I have mets to spine (lots of pain) but have not had those particular scans so afraid I'm no help there. Glad the house 'monkey' is off your back...really don't need that right now. ((Nam))
Soleil - Wonderful news about this treatment. Am sooo happy for you! My DH and I work parttime at a local bar/mini casino. This month they are doing Ribbons and a Drink of the Day (DOTD) to raise money for our local Cancer Help Center. This Center runs exclusively on donations. When I took my wigs, scarves, etc down I was shocked to learn they can no longer offer fuel vouchers. So...I started talking at work and it snowballed. Several other businesses are on board too and allll monies stay right here. So...I sample the DOTD...n if I like it...OK...I admit...I do more than sample...hee-hic-heee.
Glenna - dammit...da agony of da feet. Jes a widdle humor. Am really sorry this is affecting you especially while you are on a vacay. And I would be dying of heat exhaustion at 78o. (((Glenna)))
Regarding the Central Addy. I did sign up and then I tested it. It is in Alpha order and you can use either bco name or real name of the person you want to find. Pretty cool!
Love, prayers, & positive healing thoughts!
Sue
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Hi Ladies ... my name is Bren and Brenda (Naniam) is my best friend.
I wanted to let you know what's going on with her. Yesterday they went to the ER at Baptist Hospital in Winston where she gets her chemo treatments. Since last week Tuesday, her pain has been out of control. Late last night they admitted her to the regular cancer part of the hospital.
I was able to drive down to North Carolina and spend the day with Brenda and her husband today. It was pretty eventful ... I was not happy with those folks down there and was about to go all "Terms of Endearment" on them. There was no treatment plan, no information about what they hoped to accomplish or how they were going to get her pain under control.
Finally a patient case manager arrived ... and oh boy ... we let her know we had lots of concerns. She got the ball rolling! Last night she had an MRI and while I was there the neurosurgeon came by and said he did not feel that surgery was an option in her case.
Then the attending doctor came in and they talked at great length about her pain and the treatment. She's receiving Dilaudid every two hours and Neurontin and Tordal were added this afternoon. They may have to up the dosage of her 12-hour Oxy as well.
Radiation to her spine was also discussed. It was decided that radiation wouldn't work on her spine because she has so many widespread mets in the area, there isn't one focal point they can target.
Tonight they are going to do an ultrasound on her swollen leg to see if there is any cancer hiding in there causing the swelling and pain.
If she's going to be there a few more days, I'll drive back down and spend some more time with her. She may have to stay in the hospital through Monday when she gets her chemo treatment and Zometa.
Please keep her in your thoughts. I love her so much ... it hurts to see her in so much pain.
hugs,
Bren
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Thank you Bren
Please send Brenda my love!
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Sending Brenda good wishes and hope they can aleviate her pain. Thankfully, a case manager is on top of things.
Terri
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I don't post here very much..Just wanted to say my prayers are with Brenda and Bren it is so hard to see someone you love in pain!! Please tell her we are thinking of her!!
Terry
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Thank you Bren for being such a good friend. Please give Brenda our love!
Kimber0 -
Thank you Bren. Please tell her we are all pulling for her.
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I'm glad you are there for her. Just so you know, in my opinion, she's on VERY minimal pain management. Toredol is nothing for cancer pain, and nurses I've spoken to all admit that. Dilaudid is pretty minimal too. So, when you go back, if she's still suffering, they should try to put her on morphine or something. I get so frustrated at doctors who will not treat a cancer patient's pain! At this point, who cares?
When I was in the hospital, I had 2 mg of dilaudid every hour, and I had a morphine drip. I also had oxy 20 mg morning and evening. I weigh 100 pounds. It barely kept my pain manageable so I know they can do more for her. Toredol should never be allowed in a cancer patients regimen, I just don't know why hospitals love that stuff so much.
Just my opinion. You are a good friend for helping her and thanks for the update. Say hi from all of us here.
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BinVa, I'm not sure exactly what all is the issues with Naniam and her back, but I have a pain pump that addresses the pain from my back. It degenerated really badly when I was on arimidex and was dx with some back disorders. They tried the nerve blocks which did nothing to help my pain. Finally a ortho doc put a pain pump in my abdomen and it has a catheter that goes into the spinal cord. It drips liquid dilluad directly into my spinal cord constantly. So I basically have a 24/7 dilluad drip and it does a good job at controlling the pain. Alhtough right now I am having some breakthru pain and am not sure why. They already upped my meds by 20% this month and doubt that will increase it anymore. If you want more info on the pain pump and exactly what it does and looks like, just send me a PM and I will be happy to share.
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Bren, thank you for letting us know what's happening with Brenda. She and I have PM'd several times and I was getting concerned about her. Please give her my best.
Soleil, thank you for posting info about this elsewhere, otherwise I would never have known. I don't follow this thread.
Tina
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Bren, please let Brenda know that I am praying for her, if you can. She has been so good to keep track of me ever since we both moved on from the Faslodex forum and wound up frequenting different forums. She is a jewel and I just can't stand to think of her being in so much pain. Thank you for being there with her, for all of us.
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thank you bren for the info. i hope brenda gets her pain controlled better soon! you are a wonderful friend. sending out prayers. i care. barb
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