Chemo June 2010

Sherry-->yay for some good news!  Hope this tx doesn't hit you too hard.

Kitty-->we'll be thinking about you on Wed!  Hope it goes well without the benedryl.  They will give it real slow, so if there is a reaction they can stop it right away before it gets too bad.

I've read that some are getting the herceptin and taxol separately--I'm getting mine on the same day, but was told it will be a very long day.  The next infusions won't take as long as the first one.  The week in between the taxol txs I'll get herceptin alone, and that will only take a half an hour.

Anyone had radiation beforechemo?  I don't know if that ever happens, but I wanted to give you some info, just in case.  Or in case you have to have chemo again someday after rads.  I've been having problems with the skin on my "bum" from the radiation I had last year (colon cancer).  The area is super red and sore.  Yesterday I had to take percocet throughout the day because the pain was unbearable.  I had a similar (but not as bad) problem last winter while on chemo, and my onc mentioned something called "radiation recall".  Apparently chemo can "recall" the skin reactions that were casued by radiation--and I had a lot of problems with rads last year!  I did a little searching online (not really expecting to find anything), and Adriamycin and Taxol both seem to cause this recall more than other chemos!  Great!  A couple of articles mentioned that steroids might help, and that makes sense because I always hurt the worst the 2nd week of my cycle--the first few days I take Decadron.  So, I put in a call to my oncs office and we'll see what he says and if he'll give me some steroids.    Just thought I'd share that info with you.

I'm not sure if I'll be able to make the 8 hour drive to KC on Sunday.  I'm too weak to help much with moving all my dd's stuff up to her 3rd floor room anyway.  I'm thinking of asking my other dd to go with instead...we'll see....Can anyone say CANCER SUCKS?  Thank you

Love

Tina

DesignerMom,  Just thought I'd weigh in about the nutritional site. It's very comprehensive but controversial since Karen Hurd is recommending soy as part of a standard diet. I personally know at least 5 women who were diagnosed with ER+,PR+ tumors and told by their docs to cut out all soy forever, due to the estrogen-like effect of soy supplements. I know that some sites and nutritionist say they think the benefits outweigh the risks, but that's subjective, too.  Besides that, there are so many soy allergies now that it's becoming epidemic. Personally, I love it but it doesn't love me and causes me to have severe, violent and dibilitating diarrhea. I can't eat soy in any form and am always doing a fast trot for a very long and uncomfortable stay in a nearby bathroom when it's added to something I haven't investigated before eating.

The AMC says eat fresh fruit and veggies. Other sites warn against fresh stuff unless properly washed and eaten at home. And even that may not be so safe. Organic isn't the best either. All those people died a few years ago from organically grown spinach at a California farm where the ground water was contaminated with e coli. I checked the websites for instructions on washing produce and found that the commercially available washes are not tested so there for not recommended. They do say to soak and rinse in cold water, wash all rind fruits before peeling.

On a side note, I was told by my onc and 4 other post chemo women not to even garden,nor to handle any fresh flowers, one, for fear of bacterial or fungal contamination, and two, for fear that insects might be lurking, resulting in bites that could cause infection while immuno-suppressed.

I know we are supposed to be trying to adopt or adapt to healthier lifestyles. But which nutritional 'guru' to follow is a difficult choice. Personally, if it wasn't for additives, food dyes and flavorings there would be nothing I could swallow now. Water without something added causes instant nausea. I gained 5 lbs in 8 days on Prednisone. Not a good thing, but it will go away and I made it through. Food that goes down and stays down is the important thing right now, in my opinion.

I have 1 more TC tx to go and will attempt to address the need for less processed food choices when I'm undergoing radiation or after I have the oopherectomy. For me, on a personal level, I have just too much to deal with already and can't fathom going the nuts and berries route just yet. This is already torturous enough. If and when I can eat now, I choose to eat whatever tastes reasonable, no matter how many chemicals it contains.

This nutritional stuff is another topic that's wide open for interpretation and has no definitive answer. Something else I hate about a cancer diagnosis. Nothing is black and white...it's all 3-D amazing Technicolor, almost like a fast paced dreamlike. You look and look and wonder what you just saw. Being one who operates on a diagnostic, scientific level, this is maddening. 

DesignerMom, I am not trying to be argumentative, nor discount your discovery of Karen Hurd. I always enjoy and appreciate your take on things and know you do thorough research. Just throwing in my 2 cents worth for the rest like me who may not have the stamina, wherewithal or inclination to deal with another big life change right now.  Bon

Bon,

I hear you on the food, at this point I'm essentially afraid of food :-)  My normal diet is really healthy, low fat, high fruit and veg, whole grains.  Most of what I usually eat cannot be adequately washed.  I also feel that there are conflicting studies for every available food which say you should either eat a lot if you have cancer, or none if you have cancer.  Soy, which I love, is a great example.  So are all the legumes, high in phytoestrogens and high in antioxidants!  Once i get off this chemo it will be back to my normal diet less the soy and alcohol.  For right now it's lots of toast, crackers, yoghurt, soup, rice, beans and cooked vegetables. 

Julia 

I had Taxol & Herceptin #1 this morning. It took about 3 1/2 hours. Feeling OK now. My Dr. wants me to take iron supplements to account for the low red blood count from the heavy period.

Bon- Yes, your ER/PR receptor status can change over time... how bizarre is that!

Bon-Thanks for the feedback on Karen Hurd.  Believe me, I don't go hook, line, and sinker into any ONE philosophy.  I sort of view it like I do friendships, take the parts that work, leave the rest behind.  And as far as eating during chemo....eat that cake, and anything else that might taste good!  And Julia, I am not giving up my one glass of wine a day, no way!  I just feel after having been cut, poked, scanned, chemoed, it wouldn't hurt to try to strengthen these good fighting machines that are serving us so well.  I marvel at how resilient our bodies are when we subject them to such torture. 

Speaking of being poked and prodded.  I just returned from my primary doctor who wanted to look at the eruption on my buttock which I thought might be a cold sore.  She had sent the photos I e-mailed to a colleague who was an infectious disease specialist.   They think that it is SHINGLES! Although one of the doctors said he thinks it might be Herpes Simplex, like a cold sore. What fresh hell is this??   I had chicken pox as a kid and it remains dormant in the body. With my suppressed immune system, it seemed to kick up the Herpes Zoster virus and hence, shingles.  As it seems to be healing on its own, she thought I did not have to take the huge initial dose of Acyclovir, just a prophylactic dose so that I don't have a worse outbreak with the remaining chemos.  I have read that the pain from shingles is some of the absolutely worse pain, sure wouldn't want a worse outbreak.   And on we go!  So the plan is that I have to stay on Acyclovir till the end of chemo.

tmarina- I'm sorry you are so pooped and might not make that long trip to KC.  I bet the sisters will have fun, too bad you may have to miss it.

Isla, come and visit me!  Cancer brings out stupidity!  At least take your laptop so you can keep us up to date on all the MIL words of wisdom:-)

DesignerMom, you know I wondered about shingles, but didn't want to bring it up and jinx you!  Shingles likes weak immune systems and my DH had it all over his butt last Xmas.  Being my DH he had it for 10 days before mentioning it or seeing a doc.  We were practically on the plane to Europe for the holidays when he told me.  We had to have a little conversation about the possible impact of not telling the person on the other side of the bed about massive, undiagnosed, potentially infectious rashes (like divorce:-) )  I hope it's not too painful for you, nerve pain sucks.

Julia

Isla  You have totally mirrored me today.  I am always get "Oh you look good" and had to spend 5 minutes with the deli lady talking about who died in her life from breast cancer.  Right now I am hiding from my MIL.   Oh yeah I also told my husband to get out of my face when he tried to make a joke about the way I was acting!  Feeling evil today!

Isla-I know people are awkward, and just don't know what to say.  It does put us in an dilemma, having to respond "positively" to a compliment.  I read somewhere here when another lady was irritated when people would ask "how are you doing" (because they really don't want to know the gruesome details!), she finally came up with a light "I'm surviving".  She said she felt like she was lying saying "fine" all the time.  I know the feeling!  Oh I wish you didn't have to go visit MIL right now.  You need positive, honest friends right now.  I am going to click my heels three times and wave my magic wand (I actually have one) and miraculously, MIL is going to be transformed into the most caring, supportive, non-judgemental, person!

Bon- I'm right with you on the "give me strength" shout. Maybe I heard you up here?  My DH is a voice actor and we have a home sound studio (totally soundproof).  It has become my own, private, shouting, praying, cursing closet.  I bet I could make a living renting it out to New  Yorkers!   

I just think people are human, awkward and yes, insensitive.  Like Bon said, until they have had someone close with cancer, they just don't know what to say.  Today I even got a stupid comment from a BC survivor who works in my doctors office.  She knows I am in treatment and in chemo.  As I am on CMF, I have not lost my hair.  She greeted me with "you look great, aren't you going to lose your hair?"  Again, I use DH's line "why are there more horses a$$es than horses?

sherry- good for you, you young-looking grandma!  How nice to be mistaken for her mom.  DH and I get the opposite as I was 42 and he was 49 when our son was born.  Everyone thinks we are grandparents.  I keep meaning to make a t-shirt for DH that says "NO, he's my son!"

Hang in there my good, brave friends!

Sherry - I am doing a happy dance for you!  That's so cool that you have less treatments and you can eat and drink again!!!  YAHOO!!!

I am getting more and more scared of allergic reactions to Taxol and not being able to take Benadryl for it.  Ughhh....

Bon--keep coming back here to "scream"!  I can't imagine how awful you must feel without any sleep!

TMarina...I slept sometime between 5 and 6 this morning. That's been it. But today the 'poorlies' are creeping in and no more oral steroids unless the rash comes back. I'm hoping that means that by tonight or tomorrow I'll get some sleep. If not, well, DesignerMom will hear me in NY and you'll hear me in MN, screaming away in FL.  I hate being whiny but this steroid hype is like having a double dose of ADHD...no concentration, no focus, not rest. I'm already borderline, with a classic Type A presonality, so this is just another wild ride.

And thanks for listening., So many of you are going through so much worse, I feel guilty complaining about anything at all.  Hugs and my hope that you all have a SE free weekend.

PS/ DesignerMom, I sure hope it isn't really shingles. Butt...glad you didn't just ...sit on it...and got it checked out.  Bon

Kittycat -I echo Julia2.  I took steroids before and my drip was really really slow.  Also I did have IV Benadryl but the nurse mentioned in passing that it was a low dose.  So,check with your onc about steroids and drip speed.

gin2ca-  Have a wonderful date.

Bon-  I am sooo sorry.  (Although you do crack me up)  What fresh h*ll is this ?  Days of no sleep!  I pray you get ten hours tonight. 

Deisgner Mom-  thanks for being our cheerleader.

Sherry-  Glad you are feeling better.  Keep up those fluids.  My pharmacist got me alone this morning and said his one word of advice was DRINK, even before I get out of bed.  He was very serious about it.  I figure he knows my whole drug profile and that was his big advice.  So, it must be important.

Tmarina-  Hello to my fellow paraprofessional

For me it's two days post Taxol.  The tips of my fingers and toes sort of feel raw, other than that some intestinal cramps which are mild, my mouth tastes funny and I need a nap.  Not bad.  Just wanted to share for those who are nervous about Taxol.  So far nothing too bad.  Oh yeah and that bad attitude I was packing last night.  Well maybe I can't blame that on Taxol.  Maybe that's just me!!

DesignerMom...Wish I was sleeping but not yet...maybe tonight I'll take 50mg Benadryl and hope that helps.

YES, check with any pharmacist you trust...I know mine at the local Wal-Mart were better versed in how to handle all the meds I'm getting than was Brunhilda and my onc. A decent pharmacist is a wondrous thing. (Yes, I confess, I go to Wally-World for my meds because they're far less expensive).

One more idea...I have a friend who is a nurse and a clinical research monitor for a company that checks on docs doing clinical trials in their various offices and facilities. Just telling you that so you know she has a medical background and research's everything thoroughly, too. She has suffered for years with outbreaks of cold sores that were, quite frankly, disgusting. They are a herpes of a sort, too, correct? She has been taking lysine for ages now and gave up all citrus...including tomatoes (but she is Italian and eats sauce because the cooking takes a lot of the acid out, or so she thinks). And she never gets outbreaks anymore. Maybe lysine isn't powerful enough or doesn't fight the blockbuster shingle variety of the latent virus, but it might be worth a try and I think it' pretty innocuous. A full course of Acyclovir seems like going after a fly with a cannon. But hey, I'm no doc or pharmacist, and I'm loopy from lack of sleep, so you can easily discount anything I say today. 

I know you're sick of the research already, but you an always try my tactic...if they have US R&D, call the manufacturer, ask for customer service and the Medical Information Department, get the pharmacists who write the prescribing info and patient pamphlets, and see what they can tell you about it's contraindications, synergistic effects and warnings. Of course now it's late on Friday afternoon and they won't be there or won't be easy to find in that firm. That's the story of my life...if something happens that requires a quick response, you can bet it will get dumped on me at the very last minute on Friday afternoon and can't be dealt with until Monday. If you go this route, hope you get an answer soon.

To All, but especially Isla ~ I too get so tired of people saying "wow, you look great" when I KNOW that I don't.  I do know that I could be looking 'worse' but I've been dealing with this since March (actually before, if you count the bad mammos done in February).  Even after my surgery, when I felt REALLY awful, I didn't get the comments or the stares that I do now that I wear scarves and caps and such to cover my follicularly challenged head....somehow losing your hair makes it so public.  I have always been open to about my cancer, so as to make it easier for people to approach me, but now it's the 'pity' looks that bother me.  Because of that, I try to put on a smile that says, "hey, I'm okay"!!!  Sometimes I don't feel like smiling.

This has been a very sad couple of weeks, we had 3 teenage girls killed in a single vehicle wreck, my future son-in-law's grandfather passed away, a friend of mine lost her 3 year old grandson in a terrible accident & the hardest of all was losing my very dearest friend who passed away in her sleep, she was only 46.  I can hardly handle this sadness, it hurts so deeply.  I just don't know what to do, or what to say, or how to help anyone when I'm not myself right now anyway.  I just cry and cry and cry....so helpless.

PS/ I just received a message that my only blood-related cousin passed away last evening after an eleven year battle with systemic lupus. She was on methotrexate and prednisone for 10 years. A terrible journey.

And yesterday afternoon one of my dearest friends greeted into the world a healthy, new granddaughter. The circle of life goes on.