Let the Games Begin....

[Lyn]

Hi Guys, wellI saw my Onc today, and he had all my faxes from the info I got from you girls plus a bit more, and he just had to agree, Carboplatin with Herceptin, he said that with the Cisplatin I may loose my hair, so we are going the other way first. I had a chuckle to myself when he dictated a letter to my doc, he told her that I had come up with a combination that was not yet approved in Australia but he agreed that it was a good thing, so there ladies it is getting pretty sad when we have to look for our cures, and that is what this Forum is about. I start on the 29th April because I had my triple herceptin today and the carboplatin will be added every 3 weeks, an hour longer in the chair but it is only for one day a month I can live with that. He wants to use me as a study, I said why not the reconstruction surgeons used me for an exhibit at the specialists exams last year and the orthopedics want to use me on the 15 May as an exhibit as I am a complicated case, no kidding I was supposed to be dead years ago, so his assistant said, the same one who didn't think I needed the MRI because nothing else could be done, I did tell my onc today that she was a lovely lady but she gave me the wrong answer, so I guess I won't be seeing her unless I want to, soon they will be making appointments to see me, but I am now entering my 7th year of continual treatment just keeping one day ahead at a time until the right combo comes along or we eradicate it all together. I was on another breast forum that I first heard of Herceptin and my onc hadn't considered it but everything fell into place and I was one of the best candidates, so here we have it, I also told him I wanted the Navelbine when I had it, another combo not recognised in Australia at the time, but did the job until I came across the Cisplatin and Carboplatin on this site, so stayed tuned for my next installment. I wasn't too worried that I have to wait until the 29th April because I have been trying to get to the bottom of this lump for nearly 12 months, and my CA15-3 tumour marker today was 11, so I still don't know how I am supposed to monitor this devil apart from my inner voice and outer symptoms. Love, Hugs & prayers to you all.

Lyn

[vicki]

Wow! eom

[Velva]

Hi Lyn,
You give me inspiration every time I read your messages. I have been receiving chemo off/on (more on) for 5yrs, for mets to skin & lymph nodes. Currently on Xeloda w/Herceptin, but onc said if this didn't work, Carboplatin would be next. So, keep us posted & keep up the fight! Velva

[Steph N.]

I am sure there is some "polite" Aussie term for that female assistant to your onc. A wonder he keeps her after hearing what she said to you! She needs to keep her mouth shut ... or find herself on the Moon one day!
Now that is off my chest ... SO GLAD to hear that you are again adding a new chapter in the book of cancer treatment Down Under. Fortunate your med onc WILL LISTEN to you and read all the information you send his way that he is too busy to go out and dig up himself. Your Herceptin must be keeping your tumor a bay so it is not going wild with that kind of low marker number. Do you also get the CEA marker test? I get both. They are low, but the CEA is lower in comparison to range numbers, which makes me feel better about slight shifts in the CA 2729.
Keep it up Brave Womyn!

[Lyn]

Hi there, your type seems like mine, I had Xeloda for skin mets to the site of original surgery, it went away and then while on Herceptin and Xeloda it came back in another place along my neck, along with a stubborn lump so I had Herceptin with Navelbine and that got rid of both and now I thought I was NED but not so, hoping and praying this combo with the Carboplatin will be the magic bullet, every thing I read is including Taxol with it and as I already had Taxotere I didn't want to touch another taxen.

Love & Hugs Lyn

[Lyn]

Hep, we just have to keep chipping away at it.

Love & Hugs Lyn

[Velva]

Lyn, Our types do seem similar. My skin mets went away with Navelbine & Herceptin 1st time , with alittle heip from radiation to get rid of bumps on neck. I too had Taxol after AC when 1st dx. Then Taxotere & Herceptin 1st recurrence in lymph nodes. I don't know if Taxanes would benefit any at this point even in the TCH combo. Keep us posted on your progress. Velva

[Kitty]

Lyn,

Are you doing the weekly regimen - it is so much easier on you. Why be afraid of the taxol? It is easier on you than taxotere especially the weekly dose. Just a thought .. it has done wonders in 11 weeks bringing my liver mets from 6.8 cm and 3.3 cm to a small line which may be scar tissue. I continue the treatment as a precaution until we are certain that is scar tissue we are looking at. I have been on weekly taxol/herceptin/carboplatin since 11/7/03 and have not missed a treatment or been the least bit ill. I work full-time, some days as much as 12 hours a day. Anyhow, just wanted you to think about it - especially the weekly dose - I don't have it 3 weeks on and 1 week off, I do continual weekly dosage. I have had to have aranesp shots three times (like procrit but you have every 2 weeks) because they give it whenever your hemaglobin goes below 11 and continue until it goes over 13. The carboplatin can lower your red blood count but has less side effects than cisplatin which can cause hearing loss and is harder on your kidneys. Anyhow best of luck and also keep an eye on avastin and herceptin combos in phase 1 trials on metastatic breast cancer. Keep at it girl ... you are one reason why I was not afraid when my cancer returned. Take care,
Kitty

[Lyn]

Thanks Kitty, I had the Taxotere and one month after I stopped my lump came back, so it didn't work. My friend had Taxol and Herceptin weekly and she just seemed to take all day for her treatment. I changed to 3 weekly triple herceptin because I was fed up doing the 100k round trip every week, I use to dread it but next day I would say yeah I'll go back next week. If the Herceptin and Carboplatin don't soften the mass on the side of my neck, which feels like it is joking me I will have to add the Taxol. I think having treatment every 3 weeks seemed to give me back a bit of life, but not so anyway I always seem to be having one test of another so it is pretty full on. Anyway not having the taxol before gives me another ace up my sleeve, just as long as we don't run out.

Love & Hugs Lyn

[Lyn]

Hi there, you are right after Taxotere finished one month later had another lump so the drug seemed to severe for such a small outcome. If the HC doesn't work I may have to add taxol but not looking forward to being hooked up for almost a day each week. My onc suggested the carboplatin instead of the Cisplatin first, not so toxic.

Love & Hugs Lyn

[Kitty]

Lyn,

Wow that is a trip every week. I can see why every 3 weeks works better for you! In my case I just work half a day then leave before lunch and take treatment Friday afternoon. Really don't mind at all especially since I suffer no ill effects from the routine. We have a lively little group at chemo world and the world's best nurses so it's more of a social afternoon every week. Whatever gets us through it right? I am praying the treatment works for you and you can get on with things. Hugs,

Kitty

[Lyn]

Thanks Kitty, I sent a fax over the Easter Break to my Onc, I didn't want to wait the 3 weeks for my first dose of Carboplatin, so instead I am having first treatment this Thursday which will make the Herceptin 1 week late which doesn't bother me because it is supposed to stay in our system for 5 for 6 weeks anyway. What throws me is why didn't they come up with that idea. Also been doing research on Iressa which is being trialed for head and neck cancer, un be known to me my onc trialed Iressa last year for BC that had spread to the lungs, I had to read about that on the net so when I put Herceptin and Iressa in the searach engine I got the info on the head and neck, apparently it is in the same family as the Herceptin. I asked him if he had any lying around, I would trial it for him, but I did send him 2 faxes so may be that one hasn't caught up with him yet, I believe it is an oral medication. I shall keep you informed.

Love & Hugs Lyn