April 2010 starting chemo

Thanks Karen for keeping up with us, it feels so good to get that smiley!

Shygal - OMGoodness what great news - yeah!!!! So happy for you!

Karen - well it the doc thinks it may help in the long run it won't hurt to throw at it whatever we can, right?! Glad you are keeping up with us because in Sept. I am going to want that smiley face! ;-)

Well I have to break down and complain - sorry in advance! I HATE HATE HATE Cancer and chemo!! I am sooooo done with it all! I just want to eat a normal meal and not get sick from it! So tired of always having to go to the bathroom. Then there's the no hair thing - it is just gettting on my nerves - just want it all back! Hotflashes suck and not being able to sleep at night sucks too!

OK so now that I got that out I feel a little better just can't always say these things to friends and family because they say to be thankful that you are alive!! Well DUH!! Of course I am thankful for that but can't I complain a little?!

Have a good weekend!! Sorry - Kelli

congratulations to everyone who has finished their chemo.....

I haven't posted in a while but I always read the posts.....last few weeks have been so-so, I managed to acquire a wierd arm rash, then I ran a fever for a few days, neuropathy is worse, have a cough......you know, just the usual assortment of chemo SE's. The good news is yesterday was Taxol #10 so I'll be done in two weeks.  I also found out yesterday that I have been receiving Avastin versus a placebo, only tough thing is I am in arm C which involves 10 more treatments three weeks apart.  So, I'll have to make a choice of continuing on or stopping. Next week I am having my radiation planning session and will receive my tattoos. My first radiation will be September 20.

sending good thoughts to all, take care

Shygal--That is great news-YAY!!!

 Susiesue--You are almost done:) Sorry to hear about the neuropathy, I had that during chemo, but it has gone away--hopefully yours will be the same (hugs).

Kad22- Feel free to vent away, it is great to be able to release the frustrations. Hang in there, you will be done before you know it (hugs).

Well, I started rads on Monday as well as Tamoxifen--double the fun! The only real pain of rads so far, has been having to go in everyday at 7:30 a.m.--I am so not a morning person, lol. So no worries for those of you starting rads after chemo,it has been pretty easy compared to chemo. I also started tamoxifen and the only real pain has been the hot flashes. While I had them during chemo they seem to have intensified with the tamox. I am going to try the low dose effexor again, since I would like to have a night of uniterrupted sleep. I wonder why they strike at night? Anyone know?

I hope everyone is having a great weekend:) Sorry I have been away and not posted in a while, but between radiaiton and getting kids geared up for school, I am insanely busy!

Thanks everyone! I agree Jen thank you for this site and everyone that is here to listen!!

Well I go for my #7 Taxol today so that means only 5 left after today - yeah - finally can down on one hand!!

My hair is coming back some but my eyebrows are having a hard time coming back -  sure hope they do! My nails are also getting bad now - really thin and breaking off.

Have a great week everyone - can't believe school will be starting soon! At least it has cooled off here in WI back to where I can have my windows open - ahhhh .... nice fresh air!!  SMILE!

shelleyj43 - You made me laugh when you said you forgot about your port.  That is so something that I would do!  I say don't tell the doctor and see what they say when they call you.. got to have a little fun some how! 

Wow, congrats! It's always great to hear good news!

I have a question for you all.  Does anyone find it strange that since I was diagnosed in February and have been seeing the surgion and the onc, etc. that they have not sent me back to the actual breast care center to have any further MRI's, mamo's, etc.  Just seems a little strange that they say they need to keep a "good eye" out for the next few years due to the TN, etc. but nothing else has been done.  Just wondering if this is normal and if that will all start up once chemo is done.  Thanks for any input.

Jen

Marcy4 - it is kinda strange but I guess that is how it works.  I will be finished in October so you are a little ahead of me. Hope all goes well.

Susiesue - congratulations - it's so great to have something to celebrate!

JenC, Marcy4, Kad22 - I actually just met with my radiation onc today to plan out my upcoming radiation - since my last chemo is Monday!  Anyhow, it looks like I won't have any testing before rads.  On my simulation day I will have a CT of just the breast area to confirm the field and place the tattoos.  And they said the typical course is to order the next round of mammogram or MRI at 6 months post treatment.  I thought I'd have one or the other before rads.  (I'm not TN though so it could be different...)

Speaking of tests, etc...  I am freaking out a little about not having any scans done at all.  I asked my onc again this week and she assures me that I am so low risk for recurrence that bone/CT/PET scans are not in order unless I feel symptoms.  I just worry that there is something I don't know about lurking in my liver/bones/lungs/brain and isn't it better to deal with it earlier than later?  I want to be one of those people to just trust my doctor and feel like ignorance is bliss, but....  

I'm sure this is normal at the end of chemo - and I'm still getting herceptin for the year - and my onc actually suggested seeing a psychologist or taking anti-anxiety meds if needed.  Anyone else going through anything similar?  Or are you all getting routine scans?

Sara  

It seems funny that we all have the same questions.  My concern is I don't know what kind of things are symptoms to be concerned about?  Like I said I will ask my oncologist when I see him in September.  I am glad to see treatment coming to an end, but not sure what come after the end......  I would like to believe the cancer is all taken care of, but would like some reassurance that I am right.

Hi all,

Regarding the discussion of scans, I asked my onc the same questions at my last chemo, in the form of "how will you follow up to make sure the cancer is gone" and he said he doesn't do them routinely because there is no scan that can catch a recurrence BEFORE I would be symptomatic. I know that doesn't sound too great either, waiting to become symptomatic, but that was the answer. I also found a good discussion about scans in a book I've been reading which basically said the same thing. I will quote:

"It's a strange feeling to finish treatment and assume you are cancer free but have no proof. Randomized studies have shown that routine scanning and blood work in patients who are asymptomatic does not improve long-term outcomes or quality of life. Most people who develop recurrent disease in those studies actually presented with symptoms between scans and blood work in the groups that were getting scanned. So even with intensive scanning you are more likely than not to miss the cancer before it has become symptomatic. And, on average, disease was picked up only a month earlier in the patients whose cancer returned in the screened group versus the unscreened group. ...Dr. Partridge advises against scanning for asymptomatic people because it has the potential to generate not only anxiety, but a false sense of security (my scans were fine last month so this worsening back pain couldn't be disease-I'm not going to call the doc)..."

I thought that last part was important. The book is very good, written by two professional women bc survivors, it's called "You Can Do This, Surviving BC without losing your style or sanity" by Elisha Daniels and Kelley Tuthill. Dr. Ann Partridge is their medical specialist co-author. It's an easy read, and gives a lot of helpful tips, and is current, published in 2009. Got it used on Amazon.

Hi Sara,

My onc said close the same thing about the tamoxifen. He actually is going to monitor my estrogen levels (starting after radiation) to see if I even need to take it. If they are low enough he will delay it altogether. I'm not sure how I feel about that, but at 43 there is a good chance my ovaries might start working again. He also offered the option of irradiating the ovaries which would have the same effect as taking tamoxifen. I need to look into this more. Seems a lot easier than taking a pill for the next 5 years!

Shelley

arubajan - i was really weepy last night too!  My husband kept asking me what is wrong - and the truth is that I'm just sick of this.  Sick of looking like this really.  Sounds so vain, but I am so pissed that on top of being bald (not even a shadow here except for a bunch of WHITE fuzz) I am gaining weight, my nails seriously look like they belong on a monster (one is even seeping this smelly oozy gross fluid), my eyebrows and lashes are a joke... and on and on.  I am so tired of having to think through all the steps I have to take just to go out and buy something to cook for dinner - who will I run in to, what to wear on my head, etc.  UGH.  So of course my husband keeps telling me I look great, and I'm almost done, and my hair will be in before I know it... nice of him, but hollow somehow.

I think it's really hard for the friends who aren't nearby to relate.  I have a couple of friends who never read my blog, and really don't even call very often.  Then they call after a month or so, and want a run down of how things are going, and I just don't feel like going through it all so I say I'm doing great.  Which I am for the most part, but whatever...

Pity party here at my house... sorry...

Sara 

araubajan05 - Sorry about your BFF but I dont think anyone can really "relate" to what we are going through.  My BFF is one town over and sometimes when I talk to her about it it seems like she is just not "intersted" but I think it is because she just does not get it and has no clue as to what to say.  I have the same head shadow and mine is dark to, like you I was blonde prior to and a toe head when I was young.  The good thing is my hairdresser assures me that no matter how it comes back it can be fixed:)  You can at least look forward to some pampering to get the hair you want (just trying to put a little smile on:)) 

Chin up girls.  I know its hard and I like most of you are having more bad days than good waiting for this f'in teatment to be over (8 more Taxol to go).  I JUST WANT MY LIFE BACK:) 

 ((((HUGS)))))) to all of you.  

Dutchgirl6 - Ill bring the cheese:)