Chemotherapy for Stage IV
Comments
-
Hey Karen Welcome home!!!
Sometimes its not Stupid Cancer but Stupid Everything Else LOL!
Hope you are on the mend soon
Laurie x
0 -
Karen - OMG....horrible what you've been through. Glad you are home and healing. My 1st carbo/taxo/hercept was same ol constipation too...actually it was hell, but that 2nd one and every subsequent one...complete opposite...could not stop the go-go. Had to drink liquid immodium. Good news about the drugs being avail again and I agree with you bout the Pharm companies. Makes me sick jes thinking about it. Will keep you in my thoughts and prayers that you heal soon and that the chemo doesn't add too many horrid SE's to your journey.
Kimber - Any news? Been worried about you...please post when you can and update us. Praying hard for you lady!
0 -
Karen - I am so glad you are home! I do not know how the heck I missed your first post? I'm thinking about you and praying everything is on the up-swing from here on out. I have not experienced the big D with any of those drugs but I have with others. If it hits you, make sure you stay hydrated!
XOXO
0 -
Hi everyone I am new to this board. I was wanting ti find one that was active, seems so many discussions begin and end with last response months or years ago.
I was 1st diagnosed with breast cancer 1998 tx consisted of total mastectomy and removal of 27 lymph nodes all nodes neg. was er and pr+ her-. After 2 years plus complaining of various symptoms which included back pain and increasing loss of mobility due to back pain a chest CT was done due to pulmonary nodule well nodule was stable but an incidental finding of metastatic bone cancer involving all visible bone was diagnosed.
Started tx in jan 2012 with Femara and IV zometa along with 25 radiation tx's to lumbar spine to ease pain. The question I had was about Zometa, 2 days after Tx I was running 103 fever and had severe bone pain after 2 week still fever although low grade 99.4 loss of appetite and severe fatigue. I also had strange numbness and tingling in hands and feet... did anyone else experience this with Zometa or maybe I just had another bug or something. After 2 weeks I am feeling better but still fever and fatigue linger>
Was Happy to find so many people here that state they are as many as 17 yrs into treatment. My Dr was evasive when it came to prognosis.
Thanks for listening to me hopefully someone out there can tell me if they had same problem with Zometa.
Have a great rest of the weekend and stay strong.
Sandy
0 -
Hi Sandy and welcome to the gang!
Re: Zometa. I didn't have too many SE's with the first one - bit fluey and shivvery at times. I've been having it since last July and found that after the first, I had very few SE's that I notice. Think the first is always the worst!
Welcome (((((HUGS)))))
Laurie x
0 -
Hello:)
First Karen Im so sorry you are having so many issues but Im glad you are home! Welcome to all the new ladies:) Sorry you are here but this is an amazing group! We all care for each other so much!
Im home ..yeah! Im starting abraxane and herceptin tomorrow. Kind of apprehensive just becuase i ffeel so bad but I cant give this beast one more moment! The PEs are both in Fing bad spots. they tetter right between to main vessels.That is why they hospitalized me for a couple days. Did some mega doses of Lovenox. Dr said id be on it for life now..Yeah! Not the sarcasim in my voice! LOL!
Mda has been put on hold for a while..I was so bummed as was my family! Both my kids offered to drive me in two weeks over there spring break. so sweet but just not sure i will be up to it. The progression is bad for 10 weeks, i had a great team in the hospital. We went over the scans twice..ugh..I have this very large mass where they removed my implant. then lots of nodes up in the same pectorial muscle are very enlarged some near aorta have grown too. Mass in left lung only grew a few mm"s so that was almost stable. I just dont understand how this new mass grew so fast..it is 4.5 inches by 3 inches(yes inches) in 10 weeks. Now they are thinking we may need to do radiation quicker. So that is the latest with me, i will let you all know how chemo goes and the appt with my regular onc tomorrow. Her and I just dont have a good working relationship. hugs and prayers to all!
0 -
Thanks for letting us know what's happening with you - good luck with the appointment and with the chemo.
0 -
Wow Kimber, I don't know where to start! Great that you're home and on the anticoagulants (for life - yeah I had a wry smile at that one too!) Crap about the progression. Abraxane and Herceptin - I hear good things about both and hope that they get on and do the job they're supposed to .
Big hugs
PS: Are you up to watching the Oscars red carpet? My daughter and I will be bitching about the frocks in the morning!
Lx
0 -
Kimber! So sorry to hear you didn't make MDA, but hope your new chemo will zap you good! I'm praying for you hard....it's amazing to me too how some lesions grow fast and others slow. My bone mets are stable, but my skin mets are spreading all over fast.
Supposed to be the same cancer... I guess different types of organs/cells have different receptors for the cancer. I did good on the Abraxane... felt pretty good and no bad side effects. Go get 'em, girl!0 -
Kimberly, I was on Lovenox too. They said a minimum of 3 months before I could switch to coumadin (by mouth) but they really don't like to switch to coumadin. Its not as reliable.
I found that the skin/fat on my outer hips, far to the side of my belly,had the least pain for the shots. And that's fine because it just needs to go into the fat.
After 60 shots I asked and she let me go on coumadin which is much easier. I realize you have a much bigger clotting problem, just thought someday it might help.
You are so strong. Kathy
0 -
MemaSue - Hey! That's the agency I use...
0 -
Karen, Glad you are home but sorry for all your complications. I hate cancer! I admire your strength and attitude. Bigs hugs to you.
Kimber, Drats .... Sorry you didn't make it to Houston. You have awesome kids! There doesn't seem to be much about cancer that makes sense. I wish your relationship with your ONC was more positive. Good luck with your treatment tomorrow! Will be praying all goes well!
Sandy, welcome but of course we are all sorry you're here! We're not going anywhere .... This chemo thread is never-ending!
Wishing all a good week!0 -
Here we go again!
My wife Kimberlee is a survivor from IDC IIB, ER+ HERS-, diag Oct 2008. She had a masectomey of her left breast and 17 nodes removed. She had chemo and reconstruction. Chemo complete June 2009. All test clean until... She noticed swollen lyphm nodes in her neck Jan 2012. Dr treated like common cold until I told her to see the onc. Chest X-ray & CT Scan show it metastic to lungs and spine. Her biospy is Wed. We are completly upside down. We're in Germany (I'm active duty Air Force) and will have everything moved to Moffitt in Tampa ASAP. We are also waiting for MRI and Nuclear bone scan we had today.
Big question: What is the first line chemo for metastic to bones and lungs? Will she be able to make the flight from Europe after the first round or should be wait for treatment and move now? ONC says we need to start now and then move.
0 -
U2av8r, I do not know if they routinely use a certain chemo for bone and lung mets, but do know there are many chemos that treat both of those. My case did not follow normal protocol since I did not have tamox or any treatment for my initial breast cancer other than a mastectomy.....but this was in 1990 and when I did have a recurrence in 98, the onco I saw then said that had it been later I would have automatically been given chemo. Since I had not had tamoxifen as preventative they were able to use it as treatment on me and it shrunk the tumors by 50% and actually got rid of the places in my lung and I was started on aredia (zometa and xgeva are the newer ones) for my bone mets. There are many other hormonal treatments that can be used also and I did note that your wife is ER+. I have traveled while being under treatment....flew to Europe when I was doing hormonal treatments and did many domestic flights scheduled around or between chemo.....I think a lot would have to do with what chemo she is getting, how she feels after getting it, and what the onco recommends. How soon would you be coming back to the States and if you waited until you got home how long would it prolong getting her lst treatment? Would she be able to start immediately?
Sorry to not have really answered any questions and raised more, but there are a lot of factors to consider. Does she feel comfortable enough with the onco she sees now to take the advice to start treatment now or would a 2nd opinion help?
0 -
Hi U2
Depending on the amount / size of mets and given that your wife is ER+, the onc may consider starting her on Tamoxifen first. With regard to chemo, if she has already had chemo before, depending on her response and the chemo used, she may be able to have the same one again (guessing she may have had a variation on FEC?) or maybe something like Taxotere if she's not had it already.
My own experience of chemo is that I was given FEC x3 and TAX x3 for liver, lung and bone mets. Am now on hormonals. With regard to flying, as Marybe says, it will probably come down to how she is feeling rather than any medical reason that stops her flying but of course your onc will be able to advise.
If it was me and it was a choice between starting now or waiting, I'd go for now.
Laurie x
0 -
Hi u2,
I'm thankful you found us:) I'm sorry though to here about your wife. We just retired from the air force five months ago after 24 years. Everything the other ladies have said is so true..I'd go for treatment and then get home asap. They should be able to get her and you on a medivac flight. That way she can lay down have fluids if needed and dr's on the flight with her for safety. I was medivaced from yokota when I needed my first heart surgery and within 6 hours I was on a plane headed to wilford hall. They did the same thing for me when we were stationed in Canada. Go to the hospital commander if you aren't getting what you need, but I'm sure they will help if you want to return stateside. Just a thought ..I'm getting treatment while I type this and my nurse is a spouse too..so we both were thinking wouldn't you want to stay in Germany? They have the best treatments in the world. Or do you want to be closer to family in Florida? Just a few things to think about! I'm surprised with her history they medically cleared you for the assignment. Normally if you are EFMP it is really hard to get an over seas assignment. I wish you the best in whichever way you decide to go. If I can help from a military experience please let me know..I've been there done that with tricare.
Well ladies..I lost it with my oncologist a bit ago. Totally cried and demanded answers ..we have a much better understanding now. Basically i have tons of progression ..we could do a pet but it wouldnt change the outcome or treatment. Im waiting to get herceptin and then abraxane. We will do the three weeks on one week off..here is praying this works! Huge hugs and prayers to you all!
Kimber0 -
Kimber: so glad you 'had it out' with the Onc. Unless we speak up and talk to our doctors, they oftentimes think that we don't WANT to know or to talk about things, so they don't bring them up. It's important to have honest open dialogue with them, even on the really tough questions. I am praying the Abraxane does great for you!!
Second round of carboplatin and camtosar.... feel weak and fuzzy ... but I've usually only gotten zofran and decadron with chemo...today they added benedryl and ativan. Put me in left field..LOL Tomorrow will be better....
U2.. I often fly during chemo...but I've had few side effects so I feel relatively good. no problems with flying, but USAFmom has the best advice~ Use the services you can be provided!
0 -
Hey Kimber
You are so brave having it out with your onc. I'm not just saying that - in my book it's a really brave thing to do. I just prefer to find out what they think is happening and skirt around the edges. Like watching a movie with my eyes half-closed during the scary bits - I know they're happening but don't want them in sharp focus! Hang on in there while that chemo kicks butt
Karen - wow, with that cocktail of drugs, they'd have to scrape me off the ceiling LOL Hope today is better and a bit more in focus
Have a nice day y'all (said in a chirpy NY diner-waitress kind of way)
0 -
Hi all,
You ladies are all so inspireing.
Kimber, I need to do the same thing with my onc. I see him next week. I am only receiving zometa for my bones. The cancer in on several ribs but since I am having no pain they don't want to do any cemo yet. I am triple - , can't use horm. Had a secound opp, same outcome. I pray that God gives me the words to talk to my onc and tell him that the fear of not doing anything is much worse than pain.
I will be thinking about all you ladies and pray that God gives you a good day today.
0 -
First round of chemo went very well for mom. No known side effects however, I'm sure they will become more apparent as we go forward. We are doing a combination of Taxol, Herceptin (Trastuzumab), Paraplatin (Carboplatin), and Aredia (Pamidronate). Her platlets were a little low so we skipped the Paraplatin till next week. Her biopsy sore is healing, but not very fast. We are keeping it clean as to prevent infection. Her legs are a weak and really hasn't been able to walk since last week. The Dr. had advised to go ahead and taper from the Decadron (Dexamethasone). Has anyone experienced in weakness or muscle atrophy in legs after radiation? Please advise!
Thx.
Diego
0 -
Thank you ladies. Kim is having a biopsy tomorrow. We're both a little on edge considering they have to put her under general anethesia to get to the node deep in her neck. Please pray for a steady hand. There are a few nerves and major vessels in the way.
USAFMom...thank you for the info. We are praying for you too. Yes we are EFMP, but we were cleared because the onc wrote a letter showing she was effectively cured. As you can imagine we were absolutely floored last week when we got the news. To top it off, "Dr Death" gave her a prognosis while she was by herself and only had a chest x-ray to base it on. We pray this is just one huge screw up. The Army Doc told me he would eat his boot if he was wrong and the node came back negative. Here's to serving up some shoe leather soup! Two more questions for you: 1) How is tricare after retirement? I've got almost 21yrs in, but can stay in until 28. We were planning to retire at our DEROS, but this kind of puts things on hold. 2) What do you know about German cancer clinics? We are going back to the CONUS mainly because of family suppport. 90 days is the max anyone can stay without a VISA. We also are interested in Moffitt because it's suppossed to be one of the best in the nation and I can still fly out of MacDill.
Thank you!
0 -
Diego - I had that same Chemo but not the Rad stuff. But my legs were extremely weak from the chemo. So, can't say it isn't a little of both maybe?
U2 - sorry you had reason to post, you and your wife are in my prayers!
Treso - you funny goil, you're not old enough, gotta be at least 55 to use the Autumn Dating service! LOL
Kimber, Alesta, Quiltenchild, MaryBe, Karen and anyone else I'm missing...I love ya all for your strength and understanding...Always in my thoughts and prayers,
Sue
0 -
U2
Re: German cancer clinics, Banjobanjo (Barbara) who is originally from the UK but now lives in Bonn has her treatment there. I'm sure she wouldn't mind if you sent her a pm or maybe start a thread asking for people's experience. I know there are also some lower stage women from Germany.
Laurie x
0 -
Hi u2av8r,
You are right in what you have been told - treatments are good here and appointments are usually bookable with very litle waiting (same with scans and tests). I do not, however, know anything about big cancer centres in Germany, or 'recommended' oncologists. I've simply been treated by the doctors who first diagnosed me and so haven't done any research about where else would be good. Anywhere in this country you will get efficiency in health care and, for the most part, both doctos and nurses I have found to be friendly and helpful. I would think any city university hospital would be a good place to start and the doctor you started with could easily refer you there for second opinions/treatment plans. Sorry I can't give you details and addresses but I would not want to recommend anywhere I just found in the phone book. Certainly, if you make the decision to stay, treatment will be quickly started and you may be able to travel and complete it in the US..?
Good wishes, let us know what you decide to do,
Barbara (in Germany)
0 -
Haven't been on for a few days and lots has gone on. Kimber, you are going through so much. I'm proud of you for confronting your oncologist but sure wish things were going better for you. Hugs your way. U2, welcome aboard. You've gotten a lot of good advice. It is overwhelming when we first have decisions to make. Hopefully things will settle down for you once you've gotten a plan in place. Diego, remember that the effects from the chemo are cumulative and your mom's next treatment may be a little rougher. Karen, hope things are going better for you. I had my gemzar today, so far so good. Thanks to all of you for your constancy in my life! Glenna
0 -
Diego,
I was taking Decadron while doing radiation. I had leg weakness and much difficultly going up stairs. When I finally was weaned off the Decadron my leg muscle function slowly returned. It took a while for the Decadron to leave my body. So, it may not be the radiation causing muscle weakness. I'd talk to the onc and find out how long she'll need to take the decadron.
Now I am able to do stairs and even climb up hills. When at one point I couldn't lift my foot more than a few inches off the ground. I had to pull on the legs of my pants to get my feet into the car..
Kerri
0 -
I'm back in the hospital again!!! my new central line has a blood clot...It was put in on feb. 18, so it's only been in for about 2 weeks. .i'm on blood thinners and it may have to come out. aND, another complication.... my sinus surgery has given me some nosebleeds....this morning, on the blood thinners, had a massive nose bleed that took over an hour to stop, i never knew I could bleed that much. scary. well, I'm in the best place for that....at least they can transfuse me if i need it! Please pray for my line... if i have to take it out, don't know what I'll do about chemo.... i'm running out of useable extremities!!
0 -
Karen - OMG.....I'm speechless....sooo scary....I so wish...big time wish, that I could do something...but all I can do is pray...and I will pray...lots n lots....Please keep us posted...All my love and prayers!!!
Sue
0 -
Karen, I had a completely clotted hand- arm -port and jugular. They started lovenox and sent me home. That was last July. Now I'm on coumadin. I could get off it it I let them take the port out but I would never do that.
Not saying we have the same situation, I just know how scared I was. I thought, well I better call everyone I love one last time.
It cleared up and now my port always flushes easily. I never think about it.
what a twilight zone we live in.0 -
Karen, Saying my prayers for you. Marybe
0
