Chemotherapy for Stage IV
Comments
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Kimber, I agree with Scuttlers - go forward with the MDA consult as if it will be approved. I'm sure it will be (stupid red tape). And ask MDA about the chemo, the treatment can always change if they want but if they approve then you will be a step ahead. And you won't be giving those mets any break.
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Wow Kimber,
The whole financial thing in the states plus the military financial thing - my head is spinning just reading your post - and think you (and all the other stateside BCO sisters) are pretty organised at getting your head around it all.
Sounds like Scuttlers, Reesie and TexasK are pretty adept at the whole thing and from the perspective of someone who knows nothing, it sounds like good advice to me!
How much is this post helping
I'll just shut up now and send you big hugs and postivie vibes to get it all sorted!
Lx
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Dear Kimber, So pleased that you are on your way to MDA, but sorry that we will miss you at Hopkins. I too think that you should proceed as though the trip has already been approved. Military red tape is stupid, but my experience (limited) is that it usually works in the end. Just keep on bulldozing your way thru, hon - you are the one who matters, not the paperwork. Go AirForce! Fondly, SUE
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To all my Sisters....I need help with an issue I'm struggling with. So first I will ask this question and go from there based on the response(s).
Has anyone been diagnosed Stage IV Metastatic BC from the get go, i.e. not Stage IV from a recurrence?
Kimber....I agree with Scuttlers....go as if approved and ask to speak to someone at MDA about the chemo schedule. When I went to Cancer Treatment Centers they were very good about answering any and all of my questions before I ever set foot in the place. I will keep you in my prayers.
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Oh....regarding the question....and who had chemo BEFORE mastectomy?
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Chemo before surgery is very important with IBC (Inflammatory Breast Cancer). So YES, I did.
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I had chemo before my mastectomy...20 weeks of it! I've also had breast cancer twice in the same breast. PILC, ER++, PR-, HER-., onco score 9. The first time it was stage 1, lumpectomy, SNB, 34 radiation treatments and 4 years of Tamoxifen. The second time I had chemo, double mx with Lat Flap and total skin replacement on left breast. I had immediate reconstruction and no TE's. My BS says I'm stage 3 and my MO says I'm stage 4. I'm on Arimidex now and it's kicking my butt with sore knees, hands and feet. I'm sticking with it and will fight till the end! I pray everyday that a cure is found so our daughters and grand daughters don't have to struggle through Breast Cancer.
Nancy
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Kimber, I am joining in and saying Go to MDA.....it is a wonderful place and I was very impressed with the onco I saw there. Memasue, I know there are some who have been Stage lV from the beginning, but will have to check a few therads to see whom.
Now, for my news which I why I am popping in. The Red devil is working for me and at a pretty fast rate.....my CA 27.29 results came back 4,041....that is down over 2,000 from when we ran the test Jan 18 and the results were 6,178 and I was thrilled with that drop.....and this one is even more. Just wanted to share my good news with you. I am praying the rest of you get some good results with your treatments also.
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Yay Marybe!
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Go, Marybe, Go! Bless the red devil for coming thru for you. You are always in my thoughts and prayers - SUE
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MemaSue, yes for me on both counts. Feel free to PM me if you want.
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Go Marybe!!!!!
MemaSue - I'm an out of the box stage IV and I know Dawn (China) and Terri (ibcmets) and Barbara (Banjobanjo) are too.
I had chemo but no MX. Both oncs I have seen have not recommended I have one. I know it's one of those Onc & personal pref things and there is very little evidence re whether or not it extends your life (I've seen one paper from around 2005).
I have liver, lung and bone mets and at the moment, I don't see the point in a MX if my liver isn't great. If I got to NED, I think I might push for a BMX and clearance (that's a double MX not a bike LOL!). Will you be scheduled for a MX?
Laurie x
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Marybe, YES!!!
MemaSue, I had chemo before mastectomy and was Stage IV out of the box too.
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Hello Everyone,
My mother, Rosa V., dx on 1/31/2012 with Stage IV Breast Cancer. Two months prior had no symptoms, only a pain in her back that she couldn't get rid off. Took her to the emergency on 1/24/2012 and ER Doctor told us that this is something much worst than a pinch nerve. Did the biopsy the very next day and CT scan on Friday and on Tues. 1/31/2012 visited with the Oncologist and confirmed all of our fears that it was indeed Breast Cancer and that it had started to spread to her lungs, liver, and spine. The disease has already caused 4 compression fractures on her vertebrae, making it almost impossible for her to lie down. We are currently managing with pain killers which last for about 3 hours, along with steroids to help with inflammation and anxiety pills to help calm her nerves to help her sleep. Doctor recommended Radiation immediately, she is currently on round 5 today, hopefully she will start to feel better soon. Chemo will start this Friday unless the Doctor objects. I hope and pray that God will give us more time with my Mom.
I've been amazed on how she is dealing with all of this and including everyone that is on this forum. If I had one word to describe all woman including my mother with Stage IV Breast Cancer it would be "COURAGE". We've never as a family have ever had to deal with this type of disease, only diabetes and heart disease which are all fatal as well. I'll post more soon. If anyone has any advise please do not hesitate to reply to my post. Will check back periodically.
Take care everyone and God Bless,
Diego
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Thanks to all for replies. And Happy Valentines Day!
![th_snagjacki002_004[1]](http://farm8.staticflickr.com/7182/6875975509_de9aa2232a_m.jpg)
I can have the BMX (not the bike, LOL) just about anytime now. Am scheduled for scans, MRI, and mammo in mid-March. Was all ready to go with the surgery if these tests still show NED. Now, I'm having 2nd thoughts. My mets are, luckily, my spine, ribs, and nodes, not near as serious as liver/lung etc mets. But I am of a mindset, that I've got maybe 3 years. Is this crazy? In this thinking, I don't want to waste 6 or more months of surgery and reconstruct. The Onco at Cancer Treatment Center of America is the only one that DIDNOT recommend BMX because of the mets. But 2 diff Oncos plus my Breast Surg, and many of the women on these threads, say or have heard that I would fare better in the long run to have the BMX. It sounds like some of you felt the same way. For months I have been over anxious to get these 'motherships' removed but now...GAWD!! is there ever an easy answer...kinda feel like 'damned if I do, damned if I don't'.
But thank you all...I'll keep you posted as to my decision.
Marybe - GR8 news....You are a true inspiration to all of us...will keep positive thoughts and prayers that the treatment continues to work!
Diego - As you can see, some of the women on this site have same dx and most responded to treatment. I can feel your pain. My mom, 80, had been living with my husband and I. The very day I was diagnosed you could see the worry in her eyes. She went to take a nap and never woke up. It is neve easy losing a loved one...I hope her treatment gives her more time....I will keep her in my prayers.
Sending lots of love n prayers to all!
Sue
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Thank you MemaSue56. I really appreciate it. I'll be praying for you and for everyone on this site. I look forward to responding with good news!
Sincerely,
Diego
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Sue: I didn't know that about your mom. I think God helped her out of a situation that would have been very painful for her; seeing her beloved daughter suffer with cancer, chemo, etc, and maybe not being able to help much at 80. She is watching over you now constantly though, and helping you more than you know. I have no answer for the BMX.... that is such a personal decision. I would have mine done if it would help, but that's not my problem now. I'd cut off my arm if I could stop the progession anywhere!
Marybe: A W E S O M E !!! Prayers of gratitude going up!!
Diego: The radiation will be a big help... my pain went away, and it stablized the areas. I will pray for her and your family too.
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Karen, Thank you. Yes, I believe she spoke to me the day I got the call with the KIND of BC I had. I was in AZ doing the service arrangements for her. I got up at midnight and sat outside crying like a child...then...peace...Said she knew I would need all my strength to fight this and I could not do it and still be her primary caregiver and that she was in the BEST place to help me with my fight. So, my anger for her leaving me at such a bad time left me and LIFTED me...if that makes sense. And I am blest and grateful to have had her so close to me her last 3 years.
I will send up special prayers to her to help you find something that will stop your progression!
I will continue to mull over all the responses and let you kno what gives.
Have a wonderful day!
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Mema Sue-I was Stage 4 from the start-dxed last Feb. Had neo chemo TCH X 6 and then had a BMX in Aug and did Rads in Nov. We planned from the beginning to get rid of as much cancer as we could-my onc and I are on the same page as far as our thinking.. Chemo did a great job but the breast tumor was in the chest wall so the breasts had to come off to get to it. No one questioned ever why a Stage 4 was doing surgery and Rads-or not at least to my face.
Liver mets all gone but lung mets just went active again. I do not regret any aggressive decision so far. Hope this helps.
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Sue: I am so sorry about your mom. I am so very glad she offered you peace and you accepted. This would be a very difficult fight with a heavy heart. Did I also read in a prior post that you just lost your only sister? If so, my thoughts and prayers are with you and your family.
And, just to reiterate a common sentiment here, my thoughts and prayers are with you all every day. I may not post much but you're never out of my mind.
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This is my first time to submit a post, so I'm not shure on all the terms. What is BMX?
I was dx two weeks ago with stage VI. I have several spots on my ribs. My cancer is not hormon resposive so my onc says I can only do cemmo, but I am having no pain right now so he does not want to do anything yet. Those of you who have been going through this for some time how do you feel about waiting? I don't like doing nothing.
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Hi all..thanks for the responses..still waiting for the official referral but I've been horrible tired lately. Just woke up from sleeping most of yesterday away:) you have to love days in your PJ's! Lol
Mema sue..you are faced with a hard decision. I'm so sorry! From what I'm learning as I travel through this journey..surgery for stage IV in the past(2years ago) was not always recommended but now there are different thoughts..if the patient can handle surgery ..do it. This will reduce tumor load and spreading. I've had this talk with my surgeons a lot. So if you feel you are physically up to it..I'd do the BMX. It is an easier surgery to recover from. The reconstruction I think is a personal decision. For me and I just say me..lightly I wouldn't do it. I just had mine removed in December. I will be praying for you my dear as you make this very personal decision. (((hugs)))
@marybe..woohoo..I'm so happy your numbers are dropping that is AWESOME!
@lily..I'm so sorry to hear about the progression but glad there was some good news!
@Karen I'm with you..I'd do anything to stop this beast!
@ Laurie you always make me smile..rock on girl!
@Diego ..you and yor mom will be in my prayers.
Ladies special hugs to you all and I will be praying for you all..please have a great week.0 -
Welcome godsquilt I'm so sorry that you are joining us under these circumstances. I don't like to wait on any treatment. I hope you can get your oncologist to listen to you. Pain shouldn't be a factor in starting treatment right now. I would think your onc would want you on hormonal or chemo. Why are they saying nothing? That doesny sound right Hun . Maybe you need to ask more questions?
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BMX is bilateral mastectomy. Somewhere on these threads there is a list of abbreviations and maybe someone can direct you to it.
I myself would want them to be doing something to keep the bone mets where they are and stable, but that is just mho (my humble opinion)
Memasue, I totally believe that about your mom being with you and am glad she is looking out for you.
Thanks for all your good wishes and congrats, ladies. I really feel the credit goes to my onco. He is human and makes mistakes, but I think he has kept me going all these years.
Today I go for my colonscopy and endoscopy and I am already thinking about what I will eat when it is over. I think I will have my husband take me somewhere that I can get pancakes.....I normally don't even like them, but saw some on the cover of Food and Wine and have been thinking about them for days.
When I woke up this morning I was just lying there thinking how fortunate I am that this chemo seems to be working and I was thinking about all the threads that do nothing but complain and bash chemo and I just don't get it.....Granted it is not fun, but consider the alternative is the way I look at it...and I am not referring to alternative treatments, if you get my drift. I am just not ready to throw in the towel and say OK, I am ready to die. I think most of of feel the same way or we would not be on here discussing our treatments.
I made a big batch of cookies and brownies to take to the onco office today to celebrate my tumor markers going down. I have my treatment late this afternoon since I am having that other stuff (would say crap, but that is all out of me at present) done this morning.
Hope you all have a great day! Hope the rads are helping your mom with pain, Diego. Marybe
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@ usafmom. Thank you very much! I really appreciate all the insight on this website.
So we are schedule for our first round of Chemo this coming Friday. A combination of
Pamidronic Acid and Trastuzmab. From what we can expect the first round will be about 4 to 5 hours long. Hopefully this will get us going in the right direction. Has anyone experienced any serious side effects apart from nausau, dizziness, or fatigue. My mother is 62 years young and going strong but I hear horror stories about how this will knock her down quite a bit. Any advice on what we need to feed my mother in order to reduce the side effects or keep her strong. Thx!
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Treso - Thank you for your kind words, thoughts and prayers...Yes, my only sister(older) did pass 2 weeks ago tomorrow. Her grown boys (2) did a fine job on the mass memorial this last Sat. I drove in to Vegas for it even tho sis n I hadn't gotten along in last decade or so. Still...But I am OK!
Godsguilten - Please go back and talk to your onco. Why is he waiting? I agree with the others here, get on that chemo asap!
Kimber - Can't thank you enough. I am healthy enough for the BMX and you are probably right, that I should do at least that. Reconstruct...I can think about it later down the road. I tip my hat to you and, as always, keep you in my prayers.
Marybe - PANCAKES...yum....that is my DH talking. I can take them or leave them but I do make them for DH at least once a week. I AGREE totally w/the chemo route vs. nothing. I kno it's a personal choice to try or not try to kick this BIG BUTT...still hard to wrap my mind around NOT doing it. So sweet of you to think of your onco staff....I think I need to do something like that...thanks for the idea. And thank you for your, always insightful, thoughts on my dilema. Maybe my mom will 'speak' to me again...tee hee and help me with my decision.
dv - I'm 57 and the chemo did knock me down. Have plenty of ginger ale on hand. Also, protein drinks, like Boost or or or, crap...can't remember the others...they always have commercials about them tho. They will help when she can't, or won't eat, or when the chemo affects her taste buds and NOTHING tastes good. Protein is important. Remember, it is cumulative, that means that her 'down' time will increase as her treatments do. But SHE can get through it...many of us are LIVING proof of that. Good luck and I will keep your mom and family in my prayers.
Love and prayers to all,
Sue
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I was stage IV (ILC) from the beginning---a year now (Jan. 29). A met to the pancreas (apparently very rare) and a likely small one in the lung, but both are stable---haven't grown at all during this year. My surgeon recommended against a mastectomy since I wasn't having any symptoms and the horse was already out of the barn. My only conventional treatment is Arimidex which I have handled well with the help of some great supplements. Still no symptoms, but there's a possible tiny new nodule in the other lung, so I'll find out tomorrow whether my onc thinks this is "progress" and thus time to move on to another treatment.
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Godsquiltenchild, you'll find that list of abbreviations in this discussion board thread:
Discussion Board Abbreviation Key
You can also search any term about treatments, tests and medications and anything else related to BC at the main Breastcancer.org site.
Judith and the Mods
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Good evening all..it has been a very long blessed day. I'm going to MDA on the 27th..started out this morning being told no and I had peace about it. Later in the afternoon my case worker called me and said she guilted the gentlemen that had so no into reconsidering..something to the effect if it was his wife wouldn't he want the best! She rocks!
Then my niece calls me to say she wants to surprise her mom(my only sister) with a trip to come see me tis weekend;) in the end they are both coming! I feel so very blessed. Thank you all for the well wishes they were answered.
Going to go rest so I can enjoy their four day visit..can you just see my cheshire cat smile I'm so happy.
Hugs Kimber0 -
Kimber, love that case worker. And your postitive attitude. Look forward to hearing more. But I agree rest up!
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