Taxotere, Carboplatin and Herceptin
Comments
-
Hi dear sisters,
Haven't posted in a while. Been rather busy with family issues and children. I'm 18 weeks out, and hair's almost 2 inches now Gerber baby style.
Bold: You look fab with that blondie look. If I was caucasian, I'll try it too.
Lisa: Thanks for alerting us to the neratinib trial and the link. They're doing it in HK too! But I'll finish H only in early March. Still, it's quite exciting that there might be a drug to prevent recurrence.
BTW, where is Mommy Cupcake? Hope she is doing well. I note that all the regulars are fine.
Hugs,
Ipohgirl
0 -
Dear sisters,
Bluedasher : Oops, I mixed up. I should thank you for the link instead. The chemobrain does get to me and I cannot recall simple routine words sometimes, let alone names. Sorry.
Without all of you, I wouldn't be able to come this far and I am really touched by the camaderie shared by all my dear comrades in this fight.
I would like to ask what is the protocol in the US for us after the first year anniversary. Is a pet scan, brain MRI, etc routine for HER2 patients or does it depend on our signature? How often do you see our breeast surgeon? I see my onco once every three weeks (for the H) and my BS every three months now. The BS does a manual check and mammogram.
I was thinking that if we did get in the trial, that would mean constant monitoring of the disease. Even if we get the placebo, it would still be worth it thus. On the other hand, what about the "overdose" of mammos? That's the only "side effect" I'm worried about besides the diarrhea.
I looked up the results of the first neratinib trial and it appears that the drug is more effective in thsoe that never did Herceptin. Well.......................
Cheers!
Ipohgirl
0 -
Please can someone tell me about this trial meds what is it for and who is able to take this I have been done with Herceptin April 21st of 09 and chemo of August of 08 and I am one of the ladies who still doesn't have her hair back especially around my crown and never tell a derm. doctor that anyone in your family is bald because they do not know how to deal with Taxotere causing this and yes ladies that is what has caused it the ones that haven't got the hair back have all one thing in common and that is Taxotere but I am going to my ong. tomorrow for my blood work check up so if you can give me a name and some info I will ask him about it and what it is suppose to do. Thanks for your we all have to stick together through this mess of a journey ....
Maura
0 -
enjoylife: So sorry you have not gotten your hair back as of yet. Wow, that has to be discouraging. I hope they can find the cause for that and figure out what they can do for you!
Had the Herceptin treatment yesterday but my oncologist says he wants me staying on the Benadryl for each treatment. He was pretty adamant when I questioned him about it and once again, each doctor has seems to have their own way of treating their patients. When I asked the chemo nurses about not taking it, they also said they always give it prior to treatment. Oh well, treatment went fine and the only thing I believe I am noticing is a bit of heartburn again! Ugh!
Oncologist says I need to start the Tamoxifen December 1st. Have exchange surgery after Thanksgiving!
0 -
enjoylife, see the link a page back that Blue posted. It has all the info.
Ipohgrl, It is so nice to hear from you. Glad you are doing well. One of the resons I am doing the study is because of the constant monitoring - I figure that can't hurt!
Have a great day ladies!
0 -
Good to hear from you Ipohgirl! It does seem like we are all hanging in there. I am so grateful that we are.
Enjoy: Have you tried ovation or any other of the products specifically designed for your problem? Have you contacted the drug company and ask their recommendations? It is a known side effect. I would give it a shot. Hell I would give everything a shot. I am sorry that you have to go through this.
Grow in peace.
0 -
Bold~ Thanks for the love
Both of my capsule on my left and right where infected. I am really hoping that this will be the LAST time for all of this mess. What baffled my doctors the most was that my WB only went up to 9 during all of this. My culture did finally start to grow something so I am hoping that we figure it out and I can HEAL. That is all I want to do right now is HEAL (and get my insurance co. to pay for a flap...loll...). Call me vain but I really want boobies
Lisa~ I sure hope the cracked heals stays away. It seems like herceptin can give different side effects each time you receive the drug. I know it seems to with me
0 -
Jaimieh, srorry about the capsular issues!!!
Bad news. I never had nail issues untlil around the last 2 herceptin only's, then my finger nails started splitting and I am going to lose my right big toenail.
Lisa
0 -
Bold You look absolutely gorgeous Baby!!
Lisa 1964 Wow I just had 15 on my last 2 I have had really dry fingertips the previous 2 Hertceptin onlys, and my nails are not growing at all and splitting since chemo not looking forward to it getting worse but do appreciate the heads up I going to try to be preventative!! Lots of lotion!! Avon makes a awesome cracked heel cream in there Footworks Collection it is a great product.Everyone I have not had Benadryl for my Herceptin only I get saline for 10 min while nurse prepares med then 30 min of Herceptin then the rest of the saline I dont get the headache if I get the saline. I also get some aches and trouble with my hips while sleeping but it is tolerable, I cant remember who mentioned the smell in your urine but it is not pleasant I said it before sometimes I think the person in the next stall can smell it but I know it is just me freaking out! I am going to try to post a pic of the Pink Ribbon chair We made for the Childcare benefit It turned out pretty cool. I am pretty proud of it!! Jaimieh I said a prayer for you to get your Boobies
0 -
Thanks rock! I am pretty sick of being sick and tired. My hips hurt a lot and I am fatigued. By about 5:00 I am eye burning tired. I push trough it make dinner, then lie on the sofa like a slug. I just hate it. I smell too. I can taste the smell. It is very profound to me. My tongue burns too. I am just bitching way to much. Sorry. I know that it emanates from me because my nose is sticky all the time. Sometimes in the morning I have excreated it from my eyes. YUCK!!!!!!! It is our little miracle drug and I respect it a lot! Yet I will be glad when it is behind me. 3 more to go!!! If you think about it. We are still processing a lot of damaged or dead cells. Much more than a person who has not attacked every dividing cell in there bodies. What a trip huh?
0 -
Thanks Paula. I have a date for my next torture session 1/26/10 I will be getting a flap, my boobies r going to be stinning and I am going to healthy
.
Bold I agree I smell and taste things totally different on H. My hip hurts on and off for no reason along with my hands and feet. I will just keep chugging along. My oncologist's office has no clue when my H ends. I called a couple of weeks ago and they said 1/4/10 which would be 17 treatments and now they want to add 2 more. Well I got news for them the last 2 will be delayed for reconstruction. I love that vit H is available to us but my office does not have their act together in the least.
Okay enough ranting from me can you tell I have JP drains they make me crazy....only until Tuesday.....0 -
Hi Everyone!
Here is a pic of me as a Green M&M at my friends' Hallowedding.
We had a BLAST!
0 -
Love your outfit, Alaina!
Becky
0 -
Alaina,
Everytime you post, your personality just shines! Love the costume.
0 -
Alaina~ You look adorable
0 -
Alaina, glad for you that it looks like your having fun!
Had my first Herceptin only treatment on Monday and now I am starting with some heartburn again which I thought I would not have now that chemo is over. Now I am wondering if the heartburn I had along with chemo was due to the Herceptin. Ugh! I sure hope I don't experience what some of you have on just the Herceptin. My onc and the nurses tell me that most people don't experience any se's with just the H drug alone. Hmmm! Wonder if they really have a good feel for what most feel, seems like most here have said they have had some se's from it!
We keep plodding along.....
0 -
Bold - Is it possible that what you are smelling is nasal ulcers? I have suffered horribly with nasal ulcers due to the herceptin. Those ulcers are finally clearing up and they did have an oder. Yuck!
Lisa
0 -
Dear Ladies,
Yippee!! Finally tracked the nera trial contact in HK.
And, I jsut found out that a neighbour had HER2 too, and am undergoing Phase 2 of the tiral. I wished I had knew about her earlier - she was diagnosed in mid 2008 - I would have gone for ne0-adjuvant treatment instead which would provide more accurate prognosis.
She said as far as ERs are concerned, diarrhea is the main issue.
I have done 12 H's and my nose and ears hurt each time, not to mention the sticky sensation. Nails are still firm but I am prepared now that Lisa's told us about hers.
On neratinib, I think it's worth joining since it permeates teh blood brain barrier. This will cut the recurrence rate to our brains, a common outcome from herceptin. Besdies the constant monitoring( which we need to do anyway) i guess the convenience of having an oral tablet beats everything.
But we might just be placed on placebo....................
Hugs,
Ipohgirl
0 -
I go next Thursday to get things started for the neratinib trial. After bloodwork and scans, I start the actual trial on Nov. 18th. One of the things they check closely in the initial checkup is liver enzymes. I will be out of town horse camping with 15 women Friday thru Tues, liver test on Thursday will not look good
.Have a great day everyone!
Lisa
0 -
I have been on Herceptin since March; I am a Central Office Administrator with a good insurance plan. Has anyone been denied Herceptin for"not qualified cancer?" Blue Cross/Anthem in CT denied me without notice. I now owe over 60K. My hospital is great, but I did not get treatment. They told me that I cannot do without it. Any thoughts?
0 -
I I would fight the insurance company. I believe that Herceptin for 12 mo is standard of care for Her2+ tumors. Can your oncologist's office help you with this? Or perhaps there is an advocate at your cancer center?
0 -
My HMO gave me no problems about getting it and my cancer was only stage Ib - less than 1 cm.
Assuming your tumor tested unambiguously HER2+: HER +++ on IHC or HER+ on FISH, there shouldn't be any issue of being qualified especially since this is a recurrence - it has already shown that it is aggressive.
This isn't right and I hope that your oncolgoist is helping you with the insurance company.
0 -
I'm with Amyis Strong. This one you need to fight. Herceptin has become the standard treatment for HeR2+ cancers so if that's what you have, and you've already started treatment, then I don't see how they can now claim your cancer doesn't "qualify". Your oncologist should be able to help you in your battle.
I've started radiation this week. God, what a humiliating procedure. My technician is good (and fast), but assuming the position is painful. There's a damn lathing strip (wood) under my hips that just kills me to lay on. The window witch just casually informed me that I would have to have blood work done every 2 weeks. No one in the office or local area is qualified to draw blood from my port. If they'd tell me these things ahead of time I could have had blood drawn at my last Herceptin
I'm really having a hard time finding 100% Aloe Vera Gel around here. Brand name "Fruit of the Earth" was recommended over in the radiation thread and most gals get it at Wal-Mart. I've checked three stores and they no longer carry it. Everything else I've looked at has other ingredients that I'm not sure of. Any recommendations? I've got Jeans Cream and like it, but at $45 a tube, I'd like an Aloe Gel to supliment between applications of Jeans Cream.
Also, since my bilateral mast, (6 weeks ago) my chest, axilla area, rib chage and shoulder blades are very sensitive. Anything that even touches those areas burns and feels itchy.This is all probably normal, but it's driving me nuts.
I'm starting to feel like a caged animal. It seems my entire life revolves around treatments and appointments. For the first time I'm really getting grouchy and grumpy. I just want all this to be OVER and get my life back. I still need to set up a prosthese and bra fitting and I can't even focus on that. Depression? I guess so.
Hugs to all my sisters here. Thanks for letting me vent.
0 -
Lisa,
Sounds like quite a party! I am looking forward to your updates about the trial.
Ipohgirl,
Did you say that Herceptin causes a recurrence of cancer in the brain? Did I misunderstand? Can you please expand on that.
Linda
0 -
From what I understand, I was denied without notice. I am a Central Office Director of Science; I have the knowledge and read. The last president, however, signed a bill allowing the insurance companies not to cover this. I actually read this on this thread (thank you, Bold) last summer and ignored it. My hospital is taking the insurance company to court, but this does not help me now. Is there a senator, congressman who can help us all? This will affect all of us!
0 -
Sweet Sheila: I am with anthem Blue cross. I have not been denied. If they approve it for one they must approve it for all.!!!!!!! Are you in California? I am sorry that you have to fight this at a time in your life that you need support. Have you tryed all the way to the top of the employee chain at blue cross? Gee what a burn!!!
0 -
My nurses at the hospital are advocating, but still, not fair. My cancer is very rare and very aggressive-grows in 6 months and I am depending on Herceptin for my survival. I have been good after chemo, but this is a new curvball.
0 -
Dear Swampy, I had rads 2 yrs ago. I still use Vanicream and it was the best thing while undergoing rads and since. I'm allergic to any aloe products. This is available at Walmart and very reasonable. I burnt the final 3 weeks and dealt with that in the winter for the following 4-5 weeks. My bra line never did totally like the tight band, so don't get in too big a hurry for a prosthesis; give your skin plenty of time to heal. I just got a prosthesis now after my recurrence and mast.It took me 4 tries of shipping boobs back and forth in the mail. Way more traumatic than hair/wig transition.
Sorry I didn't get on board sooner, but I've been reading the chemo Oct posts.I do have questions as my face flushes alot. and my fingertips were really red and sensitive and pruney skinned. Have any of you had strange or e=severe skin problemswith this TCH? How did you address them? Maybe one of you could direct me to an earlier post ifthis has already been discussed. I'm just wondering what lies around the corner...don't we all. I'm 3 down and 3 to go and then I stay on herceptin at 3 wk intervals (right now I get it weekly) till oct 2010. Well, I'm losing my focus for now. my eyes are affected by dizzyness from the meds. I'll ck back in tomorrow. Hope you all catch some good zzzzzzzzz's , My steroids are interferring with mine. arby
0 -
Thank you so much, Bold. I am amazed and impressed about your knowledge.
In my district, we have many going through this-I often quote you. I have appealed. The hospital is paying-I am blessed. But in the end, this will bankrupt all of us.
0 -
Jamie...I just found out today that my expander has failed after radiation. A spot on my mastectomy scar opened up and my expander is exposed and now contaminated. My PS says thatI cannot get implants now. It really sux because I have had this very uncomfortable expander for 9 months and now it looks like it has been all for nothing because now I will have to do a flap surgery. That is something that I really did not want to do, but now I have no choice. I am debating on which flap to do. Which one are you going to do? I have heard that the DIEP is better than the TRAM because they don't take muscle, but not a lot of PS do them. I actually would much rather have the GAP Flap (from the buttocks) because I have more flab there and I would rather have a scar there than across my waist.0
