Taxotere, Carboplatin and Herceptin
Comments
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LilyLou, I would definitely ask the hospital what the difference was. That is crazy! that test should never cost that much unless they did something really different. I do not see how changing onc would cause it to cost more. Are you taking an Echo, MUGA or NVG? they are all about the same but the Echo does not use nuclear med in your veins but the others do. I would want answers about the difference in cost even if your insurance is paying. That is what makes the cost of our insurances to go up.
I hope everyone can have a good weekend.
Carolyn
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Well, 2 days post Chemo 1 and the nausea began! Took 2 anti-nausea meds which actually knocked me out for 15 hours! How do you deal with the diarrhea?
Besides that, I'm holding pretty steady 3 days after. Is it true that the side effects get cumulatively worse the farther along you get?
Glad that this board exists, ladies. We can beat this thing!! I have once before and I'm not giving up!
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amywolfie - I took Immodium for the diarrhea. I only had a couple of really loose stools and when the Immodium kicked in, it took care of them.
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amywolfie -
for me, the se's were cumulative. # 1 not so bad, # 2 a little worse, # 3 mack truck hit me, but they went away earlier to. # 4 and # 5 similiar to # 3. # 6 not so bad, part of it was I knew I was done - more of a mind over matter thing. 10 days after last one - felt pretty good.
Never had nausea on this though. Could be all the pre-meds I was given helped prevent it.
Good luck
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amywolfie -
Better to have the diarrhea than the opposite - I ended up in the hospital after #2 completely impacted. My Onc did not bother to warn me about this as most have the diarrhea. When the fast growing cells die out in the colon they can cause a glue-like effect and that is what happened to me. Had I been paying close attention to this possibility, I would have been countering it and the whole horrid experience could have been avoided. Then my colon was so irritated that ended up in the hospital again after #3 because an infection developed in the weakened colon!!!
Gramma 23 -
Plan to get answers on the $11,000 Echo - could be a billing error ?? Anyway, will find out when I go for the next one on Monday.
Was somewhat down today - anyone else have these times of feeling down and sorry for yourself? Was trying to catch up in the office (so many things got put on hold when the Dx happened last Nov) and my wig was HOT & itchy so I took it off (until I caught sight of myself in the mirror - wig went back on) then my nails are down to the quick and still crumbly so the ends of my fingers are sore when typing. Jeeeze! Sometimes I just have to complain and say 'enough already'.
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try 8-12 grams of L-Glutamine 2 to 3 x per day dissolved in what ever your drinking. it worked for me. L-glutamine also helps prevent neuropathy per my oncologist, Dr. Keith Block.
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Thanks for the replies, ladies. 4 days after Chemo #1 and I'm feeling OK -- just that my entire digestive tract has been twisted out of shape. Still, it's very livable. If I haven't developed mouth sores and other se's, can this still happen as the infusions progress? Thanks.
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I was the most sick after my 1st chemo tx. I was trying to work and just could not. the next chemo I got mouth and genital sores so bad I wanted to die. This on top of vomiting and diarrhea. I would be sick for 2 weeks and then the next few days before next tx was better. I think I got constipated before #4 and I really thought I would die that time but finally got passed that. One thing for sure I would rather have diarrhea. I could not eat or drink for the first week after chemo and I got to where I could drink Boost or broth. I guess enough to keep me going but I got really low red blood counts and had to have nine units of blood over the 6 months. I kept getting dehydrated too so don't let that happen. I finished in Nov 2008 with TC and then my husband had to have triple bypass so I stayed at the hospital with him during the day but I would drive home at evening so I could sleep in my bed but my blood count was so low I should not have been driving. they gave me 3 units of blood the day he was supposed to go home and I had to have my daughter and her husband come get us. I wish they would have just done that the day before and I would have stayed all night with him but they didn't. I never want to live thought that week again but God was with us and things worked out. My brother was going through cancer tx in Houston TX at that time too so I was so worried about him and he about me. In Jan. 2009 just as I was doing Radiation he died. I can't believe we made it though all we had to go through but we did, with God's help. Without our faith it would have been much harder. I hope and pray everyone has a strong faith to help. I hope I never have to go through this again but if I do then I know I can do it. Friends are great too.
The one thing I do know is everyone goes through this different but we can help each other here. the ones that have finished and the ones that are just ahead of the ones just starting. Take your nausea meds and drink water. the most important things I can tell anyone. Also use mouth wash of salt and soda water every time you eat or drink something and any other time you think of it. If you get genital sores Baby bottom ointment is great for that. I have never heard of anyone having the sores on the genital area as bad as I had them but some have had them for sure. You can search a topic on this board and you will find lots of answers. the Search is at the top of the page just below the LOGOUT. Search if you feel good and you will find lots of answers. Rant and everyone will understand. I still get the blues at times and feel sorry for myself but don't let yourself stay there. Get up and get moving. Keep your mind busy is really important.
Carolyn
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When referring to genital sores do you mean on the exterior only? Can you have these on the interior? Last treatment was 3/23/10 and still I am very sore inside. Went for a Pap just to be sure there was not some kind of infection and there was not nor did I get any good advise or solutions. This must be a SE and wondering if anyone else has noticed this and if so, what did you do about it.
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Hi Everyone!
Reconstructive Surgery is right around the corner!
3 days away on 8/25/10! *eek!*
I will go into the hospital @ 9:30am and surgery will begin at 11:30am.
First I will have my port removed. I have to admit, there's a part of me that's sad to see it go. It saved the veins in my arm from having to get stuck every 3 weeks for a year, and provided a safe and effective manner to deliver all my meds and chemo drugs. Thankfully, it never got clogged or infected. My chemo nurses tried to convince me to keep it in, since I have to get Zometa (prevents recurrence of breast cancer in the bones) infusions every 6 months for the rest of my life. BUT it is a foreign object in my body that is more prone to complications and infections the longer it stays in. So I'm getting deported! LOL!!!
Next, my breast surgeon, Dr. Bedi, will come in and remove my healthy breast, Louise (Thelma got removed last summer). I've decided to do this because my aunt was diagnosed with breast cancer a few months ago, and while there is no evidence of a genetic link, I'll simply have more peace of mind ridding my body of all breast tissue. I also have an aesthetic reason, I want a matched set!
Speaking of which, once Dr. Bedi is done removing Louise, Dr. Chang, my plastic surgeon, will start the long process of DIEP Flap Reconstruction. Each side takes 4-6 hours! First they will "harvest" my abdominal tissue and fat, and then they will start reconstructing and giving me a new set of breasts. Then they will zip my abdomen back up, resulting in a surgical "tummy tuck!" *yeah, baby!*
No, I have not ultimately made up my mind on B-cups vs. C-cups. That decision will be made Wednesday morning. Stay tuned! LOL!!!
I will spend the first night in ICU, and then on Thursday get moved to a regular room. I will be discharged from the hospital on Saturday 8/28 and spend the first two weeks of recovery with my Mom.
Once I get cleared to drive, I'll spend the balance of the recovery time at my own apartment.
So folks, here we go again! But it's all good!
My pastor prayed a POWERFUL prayer over me today at LIFE Church! I was first surrounded by members of my church who were also survivors of cancer. Then we were surrounded by any woman who had cancer in her family. Then WE were surrounded by medical professionals. And finally we were ALL surrounded by anyone who touched and agreed with the positive outcome of renewal and healing in ALL and ANY life affected by cancer.
Scripture promises that God will restore to us what the locusts have stolen. I am truly blessed to have one of the pioneers of the DIEP Flap procedure performing my surgery. But more than that, I am in the hands of the Greatest Physician there is, and because of that, I am at peace. Periodically freaked out at the magnitude of it all, but for the most part, at perfect peace!
Just like last year, I'm asking everyone to pray, send good vibes, and eat something sweet the day of surgery. My own version of Eat, Pray, Love! LOL!!!
I'll see you as soon as they let me have my phone back!
Bringin' Sexy Back!
Alaina
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Alaina,
Prayers for your health and healing, sister!
I'm so happy you're on your way, and you got to check some items off your bucket list first too!!
Good for your with the deportation...free at last!! I would do the same thing- can't wait!!!
((((HUGS))))
~Melanie
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Alaina...I will be praying, sending good vibes and eating a sweet in your honor on the 25th! Bon
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LilyLou, I do not remember if it was internal too or just external I just remember how sore I was and I would bleed from using toilet tissue. I had diarrhea too. I imagine if you can have internal mouth sores you can have internal genital sores. thank goodness my onc was aware this could happen and they gave me anti fungal and antiviral meds. along with the baby bottom ointment and the mouthwash for chemo patients I got better within a week or so. so miserable! My nurses looked at my mouth and they said they had never seen it that bad before. I always took good care of my teeth so I am not sure why it hit me so hard. they told me to use gauze to clean my teeth for a while instead of a brush and that is hard to do.
Alaina,I am so happy for you and of course you will be in my prayers. Did you have radiation? My onc said it was harder to heal if you have radiation but I imagine you didn't since you had a mast.
As for the de deportation I am happy for you too but I must keep mine a while longer I guess. My onc said indefinitely. I supposed he thinks it will be needed again. I won't ask him again because once he has said it he does not want to hear about it again. I am going to try to not take the Procrit if I can. It is so expensive but of course it will depend on how low my hemoglobin is this time.
Carolyn
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My soon to be 89 year old Mom was diagnosed yesterday with Salmonella after nearly 3 weeks of uncontrollable diarrhea. It was most probably sunny-side-up eggs she ate at a local restaurant.
I have an app on my iPhone from the FDA regarding recalls. Not only have they recalled eggs in the past couple of weeks for Salmonella contamination but also some pistachios, alfalfa sprouts, and frozen mamey pulp (a tropical fruit often added to smoothies and other things). All for Salmonella. It's getting scarier by the minute.
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Alaina~ I am wishing you a speedy recovery and I hope to see you on Sept. 11 (well if I am not working...lol..). As far as size I would go for the C and then if you still think they are too big have Dr. Chang reduce them during stage 2. Remember it is easy to reduce BUT VERY difficult to add to them. I am glad you are at peace, you are in great hands.
Bon~ I hope your Mom is feeling better real soon.
So I have had a sore neck for the last week with occasionally my hand tingling (the sensation that you get right before a limb falls alseep) and it has sent me back to cancer-land....grrr.... I just want to feel completely great for once..... Which even though I really want to feel fantastic I am having my LAST NOLA revision on Sept. 15. I had a nipple fail 1/2 of the way and a ridge that they are going to deal with before my deductible starts over again. I am not looking forward to this at all but I need to get things done....
Oh, I also need to add and echo, blood work, kidney test, bone scan and GYN visit. Oh I am not sure I am going to be able to handle all of the fun in the next month.....0 -
Cancerland...that's the perfect way to put it. We live there FULL TIME for so long, that once we get out (or mostly out), we hate going back again!
I know NOLA is a big deal but hopefully the blood work, GYN etc will all be quick, easy and over with quickly.
Hope to see you on the 11th as well.
Jamie - when you fly, do you wear a compression sleeve? I am flying mid Sept for the first time since dx and want to know if I should get one. My onc says NO and refuses to write the script for it. However, some women on here have had LE develop after flying. I know you've flown several times - what's your approach to it?
Thanks.Amy
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Cancerland...that's the perfect way to put it. We live there FULL TIME for so long, that once we get out (or mostly out), we hate going back again!
I know NOLA is a big deal but hopefully the blood work, GYN etc will all be quick, easy and over with quickly.
Hope to see you on the 11th as well.
Jamie - when you fly, do you wear a compression sleeve? I am flying mid Sept for the first time since dx and want to know if I should get one. My onc says NO and refuses to write the script for it. However, some women on here have had LE develop after flying. I know you've flown several times - what's your approach to it?
Thanks.Amy
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Jaimieh... The tingling in your hand(s) and possibly your feet is called peripheral neuropathy and is a known side effect of chemo. Mine started about the 3rd TX of TCH and got progressivly worse. I finished Herceptin last March and it still did not abate. My oncologist put me on Neurontin (Gabapentin) and it has helped with both the tingling _and_ nerve damage pain flashes as well as phantom pain from the bilateral mastectomy. The only draw back is that you have to take one pill three times a day. (I set an alarm on my iPhone for 7:00 AM, 2:00 PM and 10:00PM to remind me).
BTW, I am getting my unconditional love these days from "Boo Boo Day", my new pound puppy. He's a real sweetie and loves to cuddle and snuggle up close. I just had two doggie doors installed. One to the screen porch and another from the porch to the outside world. He's free to come and go at will and since I live in the country (and he comes when he's called) he's very "low maintenance". :-)
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Cancerland...that's the perfect way to put it. We live there FULL TIME for so long, that once we get out (or mostly out), we hate going back again!
I know NOLA is a big deal but hopefully the blood work, GYN etc will all be quick, easy and over with quickly.
Hope to see you on the 11th as well.
Jamie - when you fly, do you wear a compression sleeve? I am flying mid Sept for the first time since dx and want to know if I should get one. My onc says NO and refuses to write the script for it. However, some women on here have had LE develop after flying. I know you've flown several times - what's your approach to it?
Thanks.Amy
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Question all... my wife just started TCH two weeks ago (1 of 6 completed). Been reading a lot about Tykerb as well and think it could be a good addition to the treatment. Is that possible?
Can one take TCH and add Tykerb? If no, when is Tykerb introduced?
We're also wanting to get her on TDM-1 (but don't want to have to qualify with progression).
In absense of progression, can one add Tykerb to Taxotere, Carboplatin and Herceptin?
Thanks,
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Alaina, I'm so happy for you! What a great place to be - done with tx, getting deported, getting new breasts, and getting a tummy tuck! I'm glad you have so much physical and spiritual support. I'll be sure to eat, pray and love for you.
Swampy, I'm glad you got a new puppy. You've had enough doggy heartache recently.
SunDiego, I don't know much about Tykerb protocol. I know it is especially helpful to cross the blood brain barrier, but I don't know much more about it. Herceptin itself can be remarkably effective. I pray your wife's cancer responds well and rapidly. Hopefully someone else will have something more to add.
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Swampy, congrats on your new pound puppy! Glad things worked out for you.
SunDiego, I believe Tykerb is used when and if Herceptin fails to work or if there are brain mets. TCH is a powerful chemo for stage IV Her2+ breast cancer. After TC is complete Herceptin will continue for at least one year, but can continue indefinitely in stage IV. Then Tykerb can be brought in later if needed.
Don't give up hope, and try to stay calm! You went from I to IV so quick you're probably in shock, but this is a fantastic treatment. Your wife is very fortunate to have you supporting her, and to have this powerful protocol available to treat her!
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Thanks L_M, just was mostly interested in trying to add Tykerb "now", as I have seen a number of ladies who had brain mets pop up, and I know that Herceptin doesn't cross the blood/brain barrier, yet Tykerb does - so thought being aggressive ahead of time would be preferred. Will bounce off Onc too...
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Thanks L_M, just was mostly interested in trying to add Tykerb "now", as I have seen a number of ladies who had brain mets pop up, and I know that Herceptin doesn't cross the blood/brain barrier, yet Tykerb does - so thought being aggressive ahead of time would be preferred. Will bounce off Onc too...
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AmyIsStrong - My breast doctor and my LE physical therapist said you have to wear a compresion sleeve for the rest of your life when flying. I can not believe your doctor wont write a script.
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AmyIsStrong - I too was told to always wear a sleeve when flying. The danger of fluid buildup is very strong when flying and don't take a chance by not wearing one. As with allisontom911, can't believe your doctor says otherwise however, most insurances won't pay for a sleeve anyway. Check out LympheDIVAS.com - excellent source.
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Just started on a TCH combo today. There was no discussion of any other chemo regime. I've been reading a bunch on side effects which seem quite varied and ways to deal with them. Will keep coming back to this discussion if they occur.
For those who are having a shorter interval between infusions and haven't lost their hair, please elaborate. How is this possible as it would seem the hair loss properties of carboplatin would result in sooner loss , not later.
Have taken my first Compazine and waiting for the 'sleepiness' to kick in - 1.5 hours so far....
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SunDiego, I would ask the onc about the Tykerb, but I know it makes some very sick. I would think they would wait to see how the other meds work and how she can handle them first. I do worry myself about it going to my brain but right now I am more concerned about it going to my bones since I can't build red build cells without Procrit. It does seem right to throw everything you can at it but if the cure is worse than the cause can it work. I took the trial med Neuratinib and I would have never been able to take it with my TC. I was so sick with TC anyway. Neuratinib was worse by itself. I think prayer is one of the best things to use and no side effects. Ask all your friends and family for prayers. If you worship I know they will be praying for you both. I will keep you in mine. Try not to be too anxious around her and about the mets because she needs to be calm as possible and let what they are giving work. Mind over matter but I know it is hard and men are doers. I know you feel like you need to fix this but some things are just not under our control. My husband prayed for me all the time several times a day I am sure. he still does. I don't mean to be unkind to you because I know you love her very much. That is what she needs the most right now is your love and caring. I wish we could just have a magic wand and get rid of this horrible disease but we don't. I lost my brother and his wife did everything she could do for him. the love she gave him and caring was the most important thing. he did feel her being anxious though. I talked to him a lot when she was not there and that was the one thing he was concerned about the most was her being anxious about all of it. She is a very loving person and I know she did what she could and wished she could do more but it was not meant to be. He knew it but he always tried to tell people he was getting better but I could hear it in his voice. I hope I have not hurt you in anyway but if the onc has not recommended it then he does not think it is needed. it does not hurt to ask though. Help her not be stressed if you can. It meant a lot to me and still does. My husband has finally let me start taking myself to the doc and before he couldn't leave me a minute by myself. some times we need some alone time.
Carolyn
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SunDiego... IMHO worrying about mets at this point in treatment is pointless. You need to consentrate on fighting the battle that you know you have to deal with now. You have enough on your plate right now. The fear of metastisis is normal following treatments and reaching that sought after NED state (no evidence of disease). I was recently diagnosed with Post Chemo Depression after finishing a year of TC and H. I am well on the road to recovery after discussing this with my ocologist who said it's part of the normal process and affects different women in different ways.
Your wife is very lucky to have your strong and loving support. My Sig Other of 21 years walked out on me half way through my course of treatment and 2 weeks before my bilateral mastectomy and before I started radiation. It was devastating. Your job now is to fetch, transport and comfort her. Tell her she's still beautiful and sexy. Laugh together as much as you can. Your lives are both a tangle of appointments, treatments and side effects right now. Don't add more stress by worrying about something you can't control. If it happens, it happens and you can deal with it if it does. Dont waist your precious time together worrying about some unknown future.
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Thanks all. BTW it's just me on here trying to learn more and be aggresive with treatment. I keep her off here and focused on what is in her control - positive thoughts and enjoying life day by day, trying not to project too far into the future.
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