My last post, that excitement was short lived

[Lyn]

The power of e-mail, my onc just e-mailed me, he spoke to the Hospital and no Abraxane trial there, I e-mailed him back, "not much point better the devil I know, did you wake up with a plan?" I am having Herceptin tomorrow. That hospital is some distance away, at least I didn't prevent starting any new treatment by waiting until next week for a disappointment, there must be another big plan for me.

Love & Hugs Lyn

[Lindaw]

Dear Lyn
So sorry there is no Abrazane trial - thats so unfair.
If anyone can come up with another plan you can - let us know what it is.
love
Linda

[Lyn]

Thanks for that, I have started oral, cylcophosphamide plus Xeloda with the Herceptin and stopped the eostrogen blocker. Apparently stopping the blocker is to make the cancer cells grow so they can be treated, work that one out, I still am. Apparently my new BC has been smouldering since January, and adding cyclo is supposed to help my connective tissue disorfer as well.

Love &Hugs Lyn

[CindySue]

Hi Lyn

Tammy suggested I post here to you because I am also in Australia. I am not HER2 positive but I have been looking into a clinical trial on immune therapy in Brisbane.

My short history - dx with breast cancer in Nov 98, bone mets in April 99. I've had 3 chemos and starting my fifth radiotherapy course soon. I didn't really feel chemo was the best option right now, so I am seeing a doctor on Friday about gamma delta t cell therapy.

There is a trial but it is not free. Let me know if you want the details.

Cindy

[Guest]

Dear Lyn
What is Cyclophospamide?
I have not heard of it.

love
linda

[al from canada]

Lyn,
The reason we want cancer cells to grow while taking chemo is because the chemo drugs theoretically only recognize fast growing cells and by inhibiting their growth with hormonal blockers and such, the chemo can't differentiate between cancer and normal cells.
I hope this helps,
Al

[Lyn]

Thanks for that, I have had troubles with my net connection and then the board was unaccessable, but thanks it makes sense when you put it that way.

Loe & Hugs Lyn

[Lolly]

Lyn, how's the new combo going so far? Side effects?

<3,
Lolly

[Lyn]

Hi there, it is lovely of you to worry about me when you have enough to deal with, sideffects, well none as yet but I suppose early days, starting off with the low dose, my onc did ask if I wanted to go right to the full dose, the depression I have been in lately, I thought nooooo, don't think I can take much more. I had the arthrogram on my shoulder (pumped up with cortisone and anaesthetic), found out the last one I had in April, which did absolutley nothing, did exactly that because they had injected dye in my shoulder and done a CT scan, can you believe it, when I questioned what they were doing the reply was "all doctors do it differently" I should have asked what the IT was at the time. I am seeing the orthopaedic specialist next week, because ofthe problems I have been having with my right side of neck, shoulder, which were assumed to be as a result of Taxol/radiation and everything else I have had, actually are all of the symptoms of dislocated shoulder with ligament damage, when I faxed him this info he made an appointment to see me, my X-Rays were on file, but being a public hospital with our system being in a shambles, no one looks at anything, let alone the CT I had done, so when I tell him that I didn't have the treatemnt on the other shoulder he will go rank, had I not asked to give the arthrogram another go, I was looking at shoulder replacement. So with the rotten result of my biopsy, my left shoulder, right shoulder, neck aching, numb fingers, numb toes and not being able to take anti-inflammatories, not even neurofen I was feeling pretty sorry for myself and that was even doubling my anti-depressants. As if that wasn't bad enough, I came across this info on anti-convulsants (Epelim I take for nerve damage from surgery) impairing Taxanes, I had mentioned this before, well guess what, that goes for cytoxens as well, so not only the Taxotere and Taxol I had were weakened, but also the cyclophospamide, that is the A with C in 1998, the C with the CMF in 98, and Taxotere in 99 and then the Taxol this years, so is it any wonder it only stays a way for a short time, just doesn't get a strong enough dose to shift it, so that little bit left gets to grow again. I had to tell my onc this, he just said Oh, but now I am on another drug, he also thought my theory on my dislocated shoulder was very interesting, at least while we didn't know what was wrong, when we found the deep enlarged lymphs they got treated, as well as the thyroid, so things work in mysterious ways, had I not had the fall fracturing the shoulder, I wouldn't have put my other shoulder out, which brought out all these weird symptoms which uncovered the thyroid, the glands and that other thing wrong with my head, starts with a T, that is what I started the new anticonvulsants Neurontin for, so up until just recently I was taking 2 anticonvulsant drugs but I found out the later was ok. I am having the oral 2 weeks on and 2 weeks off, so been on it for 10 days now, and it is helping with my connective tissue disorder, my fingers aren't like steel claws in the morning that have rusted, but of course I happened to have the rare type, mixed CTD, that happens to be a bit of everything including Lupus and they treat that with the C and or Methotrexate, the M in CMF. And by the way, my type of dislocated shoulder is rare as well, fancy that, I am a walking guiness book of records. I have started walking around the block, Ron dragged me out the first 2 times, element of surprise, put your runners on we are going for a walk, so I don't seem to mind it at the moment and I think it has helped clear my fog of depression, I am human after all, I really felt like throwing my hands up in the air last week, sleeping forever was looking pretty good to me, but then I just snapped out of it and don't know what changed my mood swing, it may have been drug related, sounds bad doesn't it, like we are addicts, suppose we are but we have permission. Well I better finish this one here, and leave some more for next time.

Love & Hugs Lyn.

[Lyn]

Sorry I took so long to get back to you, I haven't been quite myself lately, to make it worse I had Net problems and then the board was down. The Cyclophospamide is the C in AC, the C in CMF, it is one of the older chemo drugs which they have found to work well with other drugs now like Xeloda and can be taken orally. The Xeloda was also the liquid form of the F in the CMF, (5FU) It is also used for many other diseases as well as cancer, and it just so happens I have a connective tissue disease so trying to kill 2 birds with one stone. Stands to reason that it hasn't worked fully in the past because of the drug I was having for the nerve damage also impaired it as well, so fingers crossed it knows everything out this time. It seems they are bringing back a lot of the older drugs now in different combinations, seems the herceptin is making them work better.

Love & Hugs Lyn

[lindaw]

Dear Lynne
Don't worry about not replying earlier. I just like top read your posts and miss you if you haven't written for a while. You have such complex things happeningn - how do you manage it all.
love
linda

[Lyn]

Hi there, they say if you want something done, give it to a busy person, yeah right, I just about need a secretary walking behind me with a diary. I had this revelation that the reason I was feeling soooo down was because I went cold turkey on the eostrogen blockers, I had been taking them for 2 years, so having hormones again was new to me. Just recently I felt like the skinny one out of Laurel and Hardy, but of course fatter, always weeping, but I got a grip again so back on track. I can't get anyone to do the research like I do, it is devine intervention most of the time, like I have a computer linked to heaven and we are not going there for a long time so all of these things pop up leading to different research, which has to be shared with everyone raising the big hand which says "GET BACK". I did actually have a dream, I was watching me being pushed down a hall way covered by a black plastic sheet, and then a voice said to me "we don't want you here get back", so I listened and that was 2 years ago, of course I could have been hallucinating on all the meds I was taking at the time. It is so nice to have ladies out there like you caring when you have so much going on yourself.

Love & Hugs Lyn

[sarah]

Dear Lyn,
sorry to hear you've been feeling depressed and going through so much pain. I find books (and when I'm too tired to read - books on tape ) a wonderful distraction. We don't watch TV at all - news is always depressing - reading hte newspapers is bad enough. Glad to hear you're coming out of your funk. stay strong
all the best, Sarah

[19Sandy45]

I started Abraxane today. It was approved January, 2005. Herceptin is not holding back the cancer but I am hoping this new chemo works. I have inflammatory breast disease and so far is spreading through my skin and lyphatic system, but not into any other organs. Good luck to you.

[Gina]

Lyn,

I think I have probably said it before, but I will say it again...have you TRIED taking ONE 5-day Z-pak with the Herceptin...at the very least it should tide you over till you get to the NEXT big thing, and if you are a wee bit lucky, it might even do you one better...just be sure your kidneys are ok, though,...and take it with PLENTY of water and walk, walk, walk to get the zithromax to circulate deep into your body tissue. Take the WHOLE thing as prescribed. Again, it is best to take it early in the morning on an empty stomach (even though the directions say you can take it with or without food) and drink plenty of water...try it...and you may find the Z-pak is YOUR next BIG thing...smile..but I am NOT joking...I just had empirically charted data showing that the Z-pak combined with one dose of 6mg of herceptin dropped a her-2 ER-/PR- person's serum her-2 levels down from over 184 to 42 in only 3 weeks...all symptoms cleared just as fast...doesn't matter where the her-2 involvement is...something to think on.... Of course this is just one person, but the second time I have empirically seen the Z-pak take out the serum her-2..., but in all my years of her-2 research...this is the most dramatic decline in serum her-2 levels that I personally have ever witnessed...better even than the oleic acid stuff I've seen...FYI.

Cheers,
Gina

[Lyn]

Thanks Gina, but I have never heard of Z Pak, so I shall investigate, first to see if we have it in this backward country, Australia.

Love & Hugs Lyn