Chemotherapy for Stage IV
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Jena welcome
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Question, do any of you keep a journal of your breast cancer journey OR of your chemo journey?
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Blondie - I keep a blog of my journey along with whatever else is going on in my life.
www.mch-breastcancer-blogspot.com
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Blondie - I keep a journal of what I found out at doctors visits and when I started Xeloda I kept one on a daily basis just for that, then when I started on Taxotere I started one but I made the mistake of not keeping it on the first one. I started keeping one on the second treatment so that I could go back and see if what I was feeling was the same as the one before and that helped a lot. I also like to keep the doctors visits in another journal so I can refer back to it if I can't remember what was said.
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Thanks Blondiex46- I started a daily journal of how i was feeling and SE's and all treatments / medications since they started me on Chemo and Rads here in Jan. Every once in a while i miss a day, but I am trying to see if there are any patterns with regard to se's and chemo on certain weeks so that I know what to expect next treatment. As of yet there has not been a major pattern, but i am just starting 3rd infusion this week. Tac every 3 weeks, w/ zometa every 3 weeks, Lypron every 4 weeks...
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i didn't start mine until recently and been doing this for 3 years...wish i would have, thanks guys
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MemaSue, I don't post often but I want to say I read your posts all the time and your last one really hit home for me in so many ways.
J1e1n1a, I did TAC for 9 rounds in 2010 and it was my heaven sent treatment. Yes I lost my hair but I have severe arthritis and the Cytoxan in it took away almost all my bone and muscle pain.
I'm kind of where MemaSue was, I did BMX in 2010 and chemo and then put on weekly doses of pill for chemo.
I knew I had problems but the hospital and Cancer Center does not do ultrasound on the BMX side to check. They kept saying being on chemo will keep cancer cells at bay. Well it didn't. I knew in June that I had a tumor because the way my side was swelling. GM doctor said oh it's your asthma and allergies, then arthritis. My cancer doctor left on a leave and it took a couple months for a new Onc Doctor. So it began a couple of tumors in my lungs, did 5and 1/2 hour lung surgery and then another PET scan and it's 5 tumors, now in vertebrae and right hip and femur. I was to start CMF, but the doctor wanted me to do Faslodex. I can't have radiation because of connective tissue disease and because of years on Enbrel, Lyrica and Methotrexate. Problem is I read too much and see that this waiting on treatment might cost me my life, I thought. Then my blood count is not good so they didn't do the CMF. Read more about CMF and that even ten years later people still have memory loss and it doesn't come back. Something I'm not willing to give up, memories is what keeps me going and bring me such happiness. I thought they were going to do Faslodex and Cytoxan together but the doctors say that this hospital again doesn't use that protocol. I will not be able to walk and I will be wheel-chair bound and not able to drive or be mobile without my Enbrel. There is no side effects and/or drug interaction between Enbrel and Faslodex. So I felt if I can't have the Cytoxan then I'll just do Faslodex and Enbrel. Onc Doctors say you can't do that. Why?! Is this again their protocol?! So I'm confused to say the least.
I'm a single mom with two daughters who still live at home and not yet graduated from high-school. My eldest has high-functioning Autism. So my younger daughter said she will always take care of her sister. Which is a big statement to say the least. I don't want to spend years again in a wheel-chair with people dressing me and brushing my teeth, yet alone wiping my a**! Did that! So how are they planning on treating, what will I have to fight for?! For me the best bet is Faslodex and Cytoxan and doctors say that would be the best too, but who do you speak to to change protocol. So I begin my fighting again, tired and bones hurting and taking my Enbrel and other meds so that I can drive, cook dinners and be present in my daughters life. If that means I will only have six months then be it. They release the new cancer drug on Friday for ER/PR- and patients that are HER2+ called Kadcyla which is to have few if any side effects. Would that work for me? With such daily bone pain and 18 surgeries to the bone that were not cancer related, walking and being able to feed myself is a must. If you saw me you wouldn't know unless you look at my partially paralyzed hands and even then people don't see my life before or now. I keep it to myself. With new doctors who haven't worked on me for years or read the boxes of my medical records would they know my life and struggles, nor do I really want them to know.
All I want is treatment that I know my body, my mind and my life can endure and that will keep me alive for a little while longer. Is that too much to ask?! Protocol is a line I think, if a patient is Stage IV and their life is on the line and there are no side effects from taking both, then why can't they try?!
I'm praying I don't loose it this week and tell them all to take a hike! I feel that now my life is to advocate that these protocols about not ultrasounding after BMX, not giving Chemo along with Faslodex to save someones life if there isn't side effects in doing so. Is my fight and if I can't get the treatment that keeps me on my feet and mobile then I'm going to be heard so that changes are made for other women who come after me.
I'm angry, I'm frustrated and I'm going to fight, even if my fight doesn't save my life!
Love to all you brave and strong women, even if I don't post much, I read, get strength and insight in so many ways from each and every one of you.
THANK YOU ALL!
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MemaSue- what is it about barns? i have heard that statement too many times now. i presented as stage 4 with mets to the lungs (strangely the ultrasound showed node negative). I have started chemo (round 2 tomorrow) and am wondering about what to do after we complete the 6 rounds. I can have the masectomy if i want to but there is the barn thing.If you had animals in a diseased barn and they escaped...would you leave the diseased barn on your property. it seems to simple to have the masectomy afterwards (I probably would not bother with reconstruction). I honestly do not know what to do. I was diagnosed in December and not a day has gone by that my breast did not hurt. Perhaps that will get better with the chemo treatments...time will tell.
Anyway, do any of you have thoughts on wheather or not to have a masectomy after you know you are stage 4?
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I just finished my first round of Zometa and Havalen. This is my off week. I have been so sick and achy all over. My stomach has been a mess. I have liver mets and one on the lower spine. I am hoping this will work. How do you get your doctors to retest your cancer to see if it's still er+. Mine seems to be fast growing and it has stopped responding to hormonal meds such as Faxoldes, arimidex. My hair is falling out again but then it was just starting to come back from last chemo. This is my third time going through chemo.
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Memesue56- I also got the horse is out of he barn talk from an orthopedic surgeon who performed my kyphopasty. This was at my 1st appt and i was feeling sassy.... I told him that yes the horse is out of the barn and grazing... but I do plan to poison him slowly..keeping him contained ..until someone finds me a big enough gun to shoot it...lol. He just smiled and said good to be so positive....wanted to punch him in the face. I love horses...and now hate that analogy. He was a good surgeon though. not greatest bed side mannor but after my response never said anthing that made me mad..lol.
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M360- I have no idea who you would start with to change protocol. did drs not say why? You would think if they give you positives on the combo they would have better explanation of why they won't,or can't put you in it. ((hugs))) stay strong..thinking of you.
Redmond- I personally plan to have it...just b/c i am 34 and want to eliminate all possible areas of reoccurance I will also end up having hysterectomy since mine is er/pr pos...and most meds that shut off er and pr can lead to issues w overies. Again this is a personal decision for me...i have my babies...just want as much time w/ them now as i can get.
Butterflylady- They did a biopsy on one of my spine mets when they fixed my fracture with kyphoplasty. This was routine..bc they take out part of bone when they do this procedure...not sure about liver maybe someone else will respond.
Having my 3 rd infusion tomorrow... hopefully not too many se's. have a great week.0 -
Interesting discussion, I had CMF the first time I had it, along with radiation....I had Femara alone, along with the other hormonal therapies.....M360, I know it is hard for you, we are here...sometimes it helps and other times it does...just know....good luck
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My heart is heavy...but I can only speak for my own 'situation'. As I said...if I were younger and with young ones at home...maybe I wud have done things differently.
The 'horse out of the barn' it meant that...this rat bastard had spread to my spine b4 I even got a chance to 'try and kill it'. Surgery....as we all kno...is sooo hard on the body, mind, spirit, immune system, etc etc. Again they say....can't offer me a cure...but can offer me time. So, horse out of the barn...why wud I want to spend what time I have left...and let me say.....no one...ever...anywhere...can tell me or you 'how much time' and I/we cud beat the odds. But this point was well taken. I chose...(and each of us must make this decision based on their own situation) not to have further surgery. Chemo...You bet....my Onco jumped on it b4 even discussing surgery and I went along willingly and thankfully I have been NED 16 mos now. That long post I made recently tells of my struggle...and my Heart aches for all who are going thru it now. (((BIG HUGZ)))
I journaled from dx thru about 3 months after my 1st NED scan. I sent them as emails as often as my se's wud let me sit and type. I even bought the 'Dragon' speak thingy. I cud not see myself 'talking about this to this relative, this friend, etc over and over', so they all left me alone and waited for my next 'email journal'. It did help in my se's and meds and what worked and what didn't, how often I needed this med or the other med. Writing it down was VERY beneficial in that regard. Anyway, I have about 100 pages....kinda wished I had stuck with it...but once I started feeling 'better' hahaha...I GOT ON WITH LIVING. Now my journal is what I say on these threads. I get silly, I get serious, I get melancholy, I get mad, I get...well....every range of emotion you can name. These threads are so very much MY LIFE SAVER. I don't kno what else to say...except....
Love, Prayers, Positive Healing Energy to everyone...And....don't give up...EVER!
Sue
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Jena, I've had the aches in my knees and legs on a lot of different treatments, especially the AI's. I did have to stop taxotere due to thread severe neuropathy in my left foot. Sometimes I couldn't even stand on it. Doing much better on the taxol. So sorry you've had to join the stage IV boards but I'm sure you've already found that there are a lot of good women to know here! There's some that are always able to cheer us up, some very knowledgeable researchers who are great at posting links for us, some who just plain share their love. Lots of cyber hugs can be found here! We'll both be having infusions tomorrow. I get Benadryl as one of my pretreatment drugs so pretty much sleep and snore through the entire treatment! Will be hoping things go well for you!! Welcome!
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MemaSue, we're glad to know that these threads are your journal; this community your support. M360, you may not post much, but what you say is so powerful! Glenna and Jena, we'll be thinking of you and hoping for SE-free infusions.
As for the horses and barns...well...that's just odd!
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Thanks Glenna..hope your infusion goes well..LOL or as well as possible...((hugs)). I was born in Frederick Md...moved here to Ok when i was little with family..lol like 10...still remember rocky beaches..horseshoe crabs..lol... and wonderful seafood.
Thanks mods..as well...:)0 -
IDIOT SIGHTING
I handed the teller @ my bank a withdrawal slip for $400.00
I said "May I have large bills, please"
She looked at me and said "I'm sorry ma'am, all the bills are the same size."
When I got up off the floor I explained it to her....
Just thot I'd post a little humor. :-)M360 - have you gone elsewhere for another opinion on treatment? I truly feel your frustration, but your arguements are 'well said'. Am sure you have voiced the same to your docs, if not, print that post and take it to them. I don't kno where you live but mayb go out of state for 2nd opinion. I went to AZ. Was very worried about insurance and out of pocket and all that. I was pleasantly surprised at how Cancer Treatment Centers of America handled allll of my financial issues. I think it only cost me about $300 out of pocket for 2 days of doc visits/tests. Just a thot, again u may have done this already. (((M)))
Redmond - I kno that feeling of leaving the diseased part on your body. As I have said...I struggled and struggled with it, cried and cried from frustration/fear etc. But also did my research and in the end...for me...was not to do the bmx. Keep asking, searching, researching it is ONE HELL OF A TOUGH decision. At least it was for me....but again...once I made it I felt sooo much calmer. Some of the gals, well 3 of them, PM'd me and we'd talk. 2 of them said if had to do over, they would not have done the surgery. All 3 of those ladies are 'ANGELS' now and I am forever beholden to them for their honesty and help. (((Redmond)))
Please feel free to pm me anytime!
Thanks Mods!
Glenna and Jena - Hoping things go smoothly with your treatments. (((G and J)))
Love and Prayers always,
Sue
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chemo today still up, benedryl later....went to the drs also he dr said....wants to scan next week so have to make a appt, from shoulders to stomach......white blood count back up, ..off for 2 weeks yay....
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Ladies I have to thank you all for the support, when I read your post it made me not feel alone in my battle. My daughters are there for me but those who struggle with BC just know!
MemaSue, I live in Northern California so if I'm not happy with all the doctors tomorrow then I am going to call AZ Cancer Centers of America. I used to live in Scottsdale AZ many years ago and would love to revisit old stomping grounds, beside maybe take a side trip to Sedona. A big hug that never lets go to say thank you, thank you for the info.
Redmond you have to make the decision for yourself but I can tell you what I feel for myself and you can take it for what it's worth. I choose to have BMX right away for I felt for some reason that more lymph glands were involved and just not showing up (I have a weird body that even fractures have not showed up on x-rays or ct scans, so I have nuclear MRI almost all the time and PET scans every three to four months). The long drawn out lumpectomy, then looking waiting, chemo, waiting then more, I felt lets take it off, it will stop it from going any further (Not my luck!). I had a easy surgery but then because of sentinel lymph glands had cancer within three weeks I had auxiliary lymph surgery. My drains had to stay in for over 8 weeks because of my complications with connective tissue and swelling. The lymph-edema got so bad that my sleeves for vasculitis, had to be a higher grade jobe sleeve and hand. Then I bought bicycle shirts for compression and they breathe much better than most sleeve and then the swelling wouldn't go into my neck, face, etc. So three years later I'm still doing daily lymph massages (My daughter took a class and worked with a lymph-edema specialist so that she could do them two to three times a day at home a blessing.). I have to work with a exercise ball going backward til I touch the floor and use three pound weights to keep my muscles flexible and not allowing them to tighten or atrophy in any way. I do yoga stretches, use Volteran and LMX cream to manage arm pain. Would I do it again knowing what I'm going through now. NO! But that is me. I do special exercise to balance me because of the off balance bothers my arthritis so I use the Wii balance games daily also to make sure I don't let my weight slowly slide to the right. I can't have reconstruction because of my connective tissue disease, and they told me ahead of time that, that would not be an option that the complications would be over the top. I still can't wear a bra because my nerves in my back and across the chest will not allow. I swell up over 25% when I even tried to do so. I see specialist and Genetic Specialist because from Cleveland Clinic, Stanford, UCSF, Cedars, and even specialist out of the country no one can control my swelling. I live in complete compression garments all the time, and have so for over 20 years. What is wonderful is that I have a jacuzzi tub that helps so much with leg, spine and arm pain. At least two times a day for a half hour or more I relax and enjoy. So that is my story on BMX. Now here's the kicker my best friend for 40 years had BC and had to have the same, she has had no problems and five years later still has no problems. She has had cancer move to other parts but they are in situ so it's not invasive just tumors in different parts and they cut them out, radiation, and she has been fine. She said even though she had cancer before and after she could not just live without her boobs! Every woman must look at their own lives, what they can live with and decide. I too wanted to know what others went through and if I should or shouldn't So I know where you're coming from. I know this if my cancer goes into my right breast, I will not have it removed. I had too hard of a time with the left side.
J1e1n1a, I have cancer in my vertebrae, I'm so worried about fracturing. You are brave and an inspiration!
Glenna, I do take benadryl but not during treatment... However, I fall asleep during PET Scans, I don't know why but all the techs get a good laugh including my daughter, I snore like a bear these days because of tumors in lungs and sternum area. They say they can hear me down the hall. So when I go in the tech says, oh coming for your nap today I see!
The horse is out of the barn.... Well, I live all around horses, wonderful Pinto's, etc.. When I first moved up to where I live now a horse jumped the fence and was walking along the road. I stopped my car, led it to the fire station because I didn't know where else to take it, it was not so far down the road and they have a fenced in yard area. As I'm walking up with this horse one of the firemen comes out with a rope and says to the horse "see you wanted to visit with the new neighbors". Then he says to me "he does this when any new car or person is in the area, how he knows, we don't understand". So I saw him yesterday and I began to cry. My daughters asked what's wrong, I said "I never got a horse of my own since my family had them when I was young", I always wanted a horse of my own. I love horses! Plus I'm a horse in Chinese astrology, and a horse in plain astrology. How I want to ride these days, but the doctors say it's out of the question. However a horse ride along the ocean is on my bucket list.
Love all you ladies and hope everyone has at least today and tomorrow filled with love, no pain and knowing that you are not alone everyone on these boards care!
Tomorrow is my big doctors day, liver specialist, and a round-table with three Oncologist, let's see what they have plan. I'm ready with my spread sheet, reasoning on why they should treat me with Cytoxan and Faslodex. Along with research about such etc.. Hope I win this round or I'm going to be taking a trip to Arizona!
P.S. It's crab season in Northern California, had crab cakes for dinner yesterday. However, they can't hold a candle to the ones in Maryland, still remember the tastes as my friends and I did a crawl in Annapolis, every place had it's own recipes, a day I'll never forget.
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M360 - good luck today with the docs. I was born/raised in Phx/Scottsdale area. Will be there end of March, still have lots of family all over the area. Stayed with a cousin in Mesa, but drive to Cancer Center (West end of Phx) was a snap on those beltways now. You've been to hell and back...and are also an inspiration. Thank you for sharing your experiences....BIG HUGZ to you too (((M))).
Love & Prayers to all!!
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I had my second treatment of Gemzar yesterday. The first treatment did a number on my blood counts, so they reduced the dose by 50% and I have to go back next Wednesday for labs. It was supposed to be my week off. When we start back up, I'll get the reduced dosage but we'll add Abraxane to the mix. I had two cycles of carboplatin - it made me miserable with nausea and it seems my cancer just loved the stuff. My tumor markers went from 1000 to almost 2000 and my scans showed progression just about everywhere.
It's a little discouraging that since May 2012 not a single chemo has worked. And yet I was NED in October 2011 after DD AC/T.
I need a miracle!
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Michelle - I will say extra prayers and send extra positive thoughts your way that this new mix of chemo works for you. (((MICHELLE)))
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LuvRVing, Have you heard about the new FDA drug that came out last week? Ado-trastuzumab emtansine Kadcyla by Roche/Genentech, and they also will help with payments for the drug or give it to you for free if nothing else is working for you I read on one site when I google the medication. You might want to look into the new studies and see if this could help you, they say about 20% of women could benefit from such. I always hope when they say such things that I would be one of the 20%.
My doctors are going to add a chemo with my Faslodex and they said probably Cytoxan again, but they are thinking of another one which they haven't told me what it is. I have to have scans of my jaws first and I have to see a cardiologist also, if I clear those then we will talk in the next week or so what chemo is next.
Hope everyone will have a wonderful weekend full of laughter and love.
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M360 - yes I heard about that drug, but I am quite sure it's targeted therapy for HER2+, which I am not. The curse of being triple negative
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Redmond: You asked about mx after stage IV. I wanted to chime in on that subject. I was dx in 2000 with right sided stage IIb. I had mx, chemo and radiation. I had once a year left side mammos after that. In 2009, I was dx with metastatic disease to the bones. Had ovaries removed, FEMARA and Zometa. In 2011, my annual mammo showed tumor in the remaining breast. I was given the choice of mx or using this new tumor as a marker. I was uncomfortable with leaving this tumor in the breast and opted for mx. On top of that, my tumor markers were rising and the bc was progressing so I was switched to Megace. When the left breast was removed, a hidden tumor was found 1 mm away from the chest wall. The Megace was not working and I started chemo. I am on my third type of chemo drug now as Taxol and Gemzar were not helping. Since we have not found a chemo that the bc will respond to, I am glad I had the left breast removed. I know getting a second diagnosis of bc in remaining breast is different than getting dx with stage IV from the get go. But, like I said, with the treatments not working well for me yet, I'm glad I had the mx.
I had my week off from Abraxane this week and it's back to chemo Monday morning. The little hair I have started to fall out this week. I've been putting off buzzing it. I'm not sure why hair loss is bothering me so much this time. It will be my third time losing hair from chemo. It just seems to be a bigger deal for me this time.
Jean
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Excellent point Paddidle...about response or not to treatment. Mine did respond to treatment...am sure things wud have been 'very' different had it not worked. :-( for you and your hair...again. (((Jean)))
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Michelle, I am pretty sure they had to reduce my gemzar dosage, too. I remember the onc saying it really did a number on the blood counts. Oh, I do wish I had kept a chemo diary. So much I forget!!
M360, keeping you in my thoughts as you prepare for a new chemo/combination and willing success on this one!!
This is my week off from taxol and I'm feeling pretty good. Scan next week. I'm hoping since TM's have dropped since December that scans will show stable or NED!
Memasue, thankful for response to treatment!!0 -
Going to get the CT scan in a couple of minutes, curious!!
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Blondie - How did the CT scan go??
Glenna - what about yours?? Have you had it yet???
My MUGA showed EF rate down, but not enuf to stop herceptin. Will have my PET on April 3. Going on vacay next week, so didn't want any bad news before.
Heard that Sweden or some such place has embryonic cure for stage IV her2+. Haven't had a chance to research it...but I'd think someone else wud have caught wind of it. We can always dream...can't we?
I pray for all of you to be OK and to have FANTASTIC reports!!!
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Got my gemzar treatment at 50% this morning. Last week's transfusion did wonders for my blood counts but I won't get a full treatment again. My energy level was so much better after getting the blood. Hopefully the 50% works OK while keeping me upright!
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