Aug.11Th Diane/Harriet

Morning ladies,

 Saw my new oncologist yesterday, glad I went, he's cool. I found out that I'm Braca2 positive and he is sending me to a genetist to  figure out my sister's and children's risk (I guess). I'm taking tamoxifen now and getting my port put back in on tuesday. Sharon Schaeffer is my surgeon and I asked her to put it on the left side this time so when my husband Gary hugs me (which he does many times a day) it doesnt press on it (I'm a right sided hugger!)..so even the small things are important to advocate for yourself. I'm going to start taxol, once a week for 12 weeks pretty soon. Im going to see this crazy, but amazing, lady surgeon who lives in Talketna (land of misfits and stoners in the total woods of alaska) who will, if I dont have too much scar tissue in my guts, put an intraperitoneal port in and Ill get chemo that way too. I read alot about IP chemo and yes the side affects were worse, many ladies quit before completing all their treatments, but even those who quit benefitted from longer times to reoccurance. I was diagnosed and gutted last Sept. 1st, I have been tumor free since then, but Im not the kind of person that can "just wait for it to come back" as my first oncologist (who I recently kicked in the ditch) told me to do...madness...When I told him the doc in Seattle reccomended I do taxol he said "your hair will fall out again" Holy shit, has he any clue...who CARES about hair, Im talking life here!!! I could of just bludgened him with a rock!

I quit taking my black cohosh, for hot flashes, I dont have but one or so every couple of days anyway and their not sure wether they have some estrogen affect anyway. I DO continue to drink my eissac tea tho, the granola's say it supports your immune system through the combination of 8 herbs, my husband was on me like a dog to drink it the first go round and tho Im not into naturals per say, I think the stuff really did have some affect. I had absolutely no side affects or problems with the taxol/cisplatin..not one nauseous or uncomfortable moment, I think it MIGHT of been the eissac...

I decided to work this time instead of staying home, Im just going to have to do really good hand washing working with all those little snot noses at school. Theyre like walking germ buckets!! I get 6 yr. old illnesses in a 50 yr. old body..egad...

When my hair started falling out in handfulls I just went to the beauty shop and have them shave my head, I teared up alittle but the handfulls of hair falling out bit by bit was just too crazy. I have 4 different wigs but those damn things are hot and the hair keeps falling in my face, I noticed Britney Spears is wearing a scarf pulled around the front, I may try that this time. I agree the bald thing is just ONE more reminder of what is going on, I know my husband said it hurts him to see it and also when I went bald in public (which I did alot) it hurt him for other people to see me and now I was sick.  Ya, lots and lots of feelings to work through.

Bought these tickets to visit my brother in Australia at Christmas from a guy off Craig's list online...all seemed well, well it turned out the total scam. I lost 2500 bucks for a lesson well learned...sort of knew .."if it sounds too good to be true, it probablly is"..live and learn. Tried to file a police, state trooper, FBI report..no one would even take my report.."We have bigger fish to fry"  Not done with them yet...they have NO idea how obstinate I can be....I hope you both have a great day today, I have you both in my morning prayers...like I said Im new to this praying thing, geez once you start thinking of others instead of yourself that ole prayer list could get mightly weighty I imagine..oh well, energy well spent. Be happy, Colleen 

hi colleen! i admire your courage & stubbornness! i'm not sure i could take weekly taxol for 4 months + ip! pls tell me when u start & how it goes! i gotta talk to my onc at the end of aug.! or see another one! your new onc accepted this treatment without batting an eyelid? what were the other options? i'm brca1, how did the knowledge affect u? it definitely pulled my hopes & emotions down a peg! + worry for my daughter! have a good w-e & keep in touch. harriet

Hi Colleen,

I'm new to this board (sort of, about a month old) and was reading your post and really enjoyed it!  Some of it gave me a laugh.  Your old onc. sounds like a real you know what (I said it on her once and it got bleeped:).  What kind of cancer do you have, ovarian?  I know of a couple of people (relatives) that were on cisplatin and that was some nasty stuff, that tea must be the key!  Maybe I'll try it, I'm not real sick yet from my chemo (1 1/2wks on continuous 5FU) but maybe I won't be to bad with the tea.  Anyway, I see you just started praying.  My list goes on and on some nights:)  I come on here and say I'll pray for someone and then at night I'm trying to remember everyone, guess I should start writing it down.  Good luck with everything and I'll add you to my list tonight!

Terry

 

On 8/12/2007 Snowmom60 wrote:

Hi Colleen,

I'm new to this board (sort of, about a month old) and was reading your post and really enjoyed it!  Some of it gave me a laugh.  Your old onc. sounds like a real you know what (I said it on her once and it got bleeped:).  What kind of cancer do you have, ovarian?  I know of a couple of people (relatives) that were on cisplatin and that was some nasty stuff, that tea must be the key!  Maybe I'll try it, I'm not real sick yet from my chemo (1 1/2wks on continuous 5FU) but maybe I won't be to bad with the tea.  Anyway, I see you just started praying.  My list goes on and on some nights:)  I come on here and say I'll pray for someone and then at night I'm trying to remember everyone, guess I should start writing it down.  Good luck with everything and I'll add you to my list tonight!

Terry

Hi Terry, I have serous papillary adenocarcinoma (say that damn thing 4 times real fast) 3C high grade ovarian cancer. Was gutted last Sept 1st. The eissac tea I order on line (make sure its the 8 herb kind) and it is what people who do not want traditional medical chemo drink instead...google it..unfortunately welcome to the club...Thank you for adding me to your list, Ill do the same for you...colleen

 

 

On 8/12/2007 Harrietg. wrote:

hi colleen! i admire your courage & stubbornness! i'm not sure i could take weekly taxol for 4 months + ip! pls tell me when u start & how it goes! i gotta talk to my onc at the end of aug.! or see another one! your new onc accepted this treatment without batting an eyelid? what were the other options? i'm brca1, how did the knowledge affect u? it definitely pulled my hopes & emotions down a peg! + worry for my daughter! have a good w-e & keep in touch. harriet

Hi Harriet, My new guy ran through the options and when I told him what Dr. Rivkin (who he knows) suggested he said that while  its true there is no know cure or miracle drug at this time

he would probablly do what Im doing..taking the taxol, getting it ip also, taking tamoxifen...doing anything I can to prevent recccurance.

What was also interesting when I told him about my mom dying at 56 of pancreatic cancer he said from the sound of it she really had ovarian cancer...that was a shocker. Knowing there is a genetic component didnt upset me, since mom died at 56 and dad at 62 I already knew something was going on in our genes. But Im going to go to the genetisit and see what she suggests I tell my sisters and my kids.

Ill let you know how the ip goes...I want aggressive therapy and my first chemo guy was way too laid back, I think its really really important that the doctor and patients expectations match... ok Ms. H Ill talk to you later...colleen 

 

i can't even have tamoxifen, not hormone-dependant! what's your ca125? didn't any of your new oncs suggest carboplatin? i can't believe there's nothing out theres except taxol; i'm definitely not a happy camper at the moment, still mulling over the possibilities. when did u finish your treatment? me end of october 2006. actually both my parents also died of cancer :late onset in their 80's! & both of them smoked like chimneys (i dont). didn't anyone mention this new vaccine? harriet

Hi Colleen,

Can I drink that tea with chemo?

Hope your doing well!

Terry

Hi Guys -

Checking  in to see how everyone is doing. Had a Hycamtin treatment today and it is 1:50 am and I am still awake from the roids. I went to that Ovations site and found that there is a way to get rid of the allergy to the Platinum agents!!! Thought I was done for being that I could not do it again, but me Doc told me that that was going to be their next step if the Hycamtin did not work. If you did not look at that site it is worth it.

Harriet -  go online and type in Ovarian Cancer Vaccine.  From what I understand it is in Germany and you need a clean CAT scan to use it. It is very expensive though. Maybe less being that you are in Europe. I know what you mean about being BRCA positive, I am too and have a daughter and a grandaughter.

My  hair is coming out in fistfuls. I picked out a new funky wig tonight and am going to get buzzed tomorrow after treatment. My boyfriend went with me for the wig and I will kill him if he tells me one more time that it makes me look ten yrs younger. Once or twice was nice but over and over??? Was he trying to tell me that I'm starting top look old??  Got out the scarves &  Yankee baseball hats. I am good to go; I know I'll feel better once I get buzzed - no more mess!!!

Colleen - please let me know when you start the taxol and IP. You will be in my prayers that it goes well. 

 

hi diane! know the feeling, 2 many questions, 2 much empathy, just leave me alone, i managed to forget i had cancer for 5 minutes! nevertheless, its great to be looked after on those hard days! now that my hair's grown back everyone tells me how young i look: great! for 59 years i've looked old! will leave it short tho anyway, its grown back all curly! never had a curl in my life, dead straight, even a perm was useless! the trouble with the vaccine is, its still experimental, not proven at all:what if it actually makes u worse?! i'm not sure they give it to people in my situation, in remission; either that or i had to start it immediately after the chemo! my onc doesnt have much faith in it, i know i mentioned it to him months ago. the trouble with all these clinical trials is u cant get the results for years! i've been following several new things & noone will tell u the intermediate results, did it help anyone, is it worse than taking nothing, is it worth the hassle.....when i asked for ip which became standard therapy in u.s. in jan. he said the side effects are major, they tried it in europe & didnt find it worth it. on this note i leave u, hope u feel fine after this chemo & keep in touch, harriet

colleen, hi! we've been looking out for you, everything ok? have u started the taxol? saw my onc today & he definitely will not prescribe anyhting if maybe (anyone listening up there?) i'd be fine anyway! tests seem ok for now; thinking of you, harriet