April/May 2012 Chemo hang out

IndigoMont11

I saw a post from someone that said she felt like she had been "carpet bombed" with her chemo. That struck me because it really is what it's like. But for me, I had always said I would fight cancer with whatever was available to me, because I want to live! In my case, this has been a combo of faith, surgery/chemo/then rads, and some Chinese herbs. DH has had two friends who did no traditional western (i.e., surgery) treatments for their cancer whatsoever. His one buddy passed from prostate cancer less than a year after dx, and he's worried sick about his other friend, who's been told her BC is in her chest wall. I would love it if there was alternative to all the surgery, essentially being poisoned with chemo, and rads messing up my skin, that was as tried and proven, but in my heart I don't feel that there is, at least, not yet. I worry about DH's friend too, because she is spending thousands of dollars on what he says is a charlatan. :-( There is nothing lower than someone who takes money from desperate people, and this is from my DH who loves and believes in what he does (he's an acupuncturist and practitioner in traditional Chinese medicine/herbs and quantum waters). He has been worried about me and the chemo, but I told him given my diagnosis it wouldn't have been responsible of me not to do it. So, part of my mission is to prove to all my loved that I can do this, just as I said the day of my biopsy.



My MO told me up front that while he was confident about my tx plan (I am not sure why, but he had said he didn't expect the PET scan to show anything), there are no guarantees. I understand that but there really aren't many guarantees in life anyway! I did wonder at first why, given the size and node involvement with my cancer, I wasn't prescribed a dose dense regiment, but then I read somewhere that it isn't generally done for women older than 50. Not always the case with every doc or every cancer; in mine I am understanding it was a combination of my age, cell grade and hormone receptor status (less aggressive).

So here I am with all of you!.

Stacie

My doc said you never really know what treatment will work for a particular patient, statistics are a guide, but he has patients who are exceptions to every rule good and bad outcomes. He has a lady ned for decades had cancer in 40 nodes. He said if you ask a group of people what med works best on them for headaches, you will get multiple answers. He said there are other chemo cocktails that would work for a single patient. That is where experience comes in. I told him to do his best and it will be enough. Who would want to be an MO?

dancetrancer

So agree Stacie - I am in awe of those who work in the cancer field yet remain kind and empathetic.  It can't be easy to do this kind of work every day. 

lisa2012

Yup, I can't imagine doing that job. Stress level in the waiting room sometimes is enough to drag me down! Bugs me hen people say, oh there is so much new stuff now, targeted therapies, new gene stuff, soon they won't need to do the traditional poison, slash and burn treatments. How does that matter to me? I have to do what is available now, not what may be happening in 5 or 10 years.



Interestingly, I hardly talk with MO at all, only my pre-chemo appts and now I'll see him one month from end of treatment. Most of my interactions re side effects etc during treatment were with two nurse practitioners and the nurse navigator. I guess it's a way to help patients access more help for basic things more quickly. But it makes me feel fairly distant from MO.

I type up a list of my questions each time, and my DH goes. But it's a bit stressful. Do any if of you have a different or similar experience?

Marcia1111

lisa2012 - I have had 3 infusions and mostly see the NP.  I saw the MO the first time at a multi-modality clinic when I was first diagnosed, then after my surgery/before starting chemo, and only once more since then.  Her NP is very knowledgable and anything she's not sure of, she asks the MO about.  I like both of them very much and feel like I'm at the cancer center constantly, even if I don't see either of them. 

dancetrancer

Lisa2012 - I go in weekly for my infusions (it was every 3 weeks for the chemo, but weekly for Herceptin).  The nurse always comes in and asks me a bunch of questions, very thorough.  She then meets with the doc and gives him a heads up of what is going on with me.  Often she answers some of my questions, but I usually have a few left over for the onc.  The onc sees me each time I have an infusion and spends as much time with me as I need.  Unfortunately, I have to wait a LONG time to see him each time, exactly b/c of the fact that he gives each patient as much time as they need.  So I understand the wait, even though I get ancy at times!  I chose him b/c of his very personal approach and connection he has with his patients.

If I have questions between visits the nurses always talk to me/ask MO if needed/and relay answer.  

 

Alicethecat

Hi Sandik and April/May members

I'm doing rads even though I had no positive nodes.

My oncologist said he wanted to throw everything at my breast cancer because I am otherwise young and healthy - at 50, that was a great boost!

Kudos to everyone on our journey.

Alice

IndigoMont11

Lisa2012 - I agree that it is hard to hear about new treatments, when they aren't available to us. There was a big news story maybe three weeks or a month ago about some new discovery, but after I listened to it, I came away with the understanding that it was more on the diagnostic/prevention side, and from what NBC's Dr. Nancy Snyderman said, it was reported prematurely. I do think things have to move forward for the sake of the generations to follow us, but it doesn't make it easier to cope now!



As for my "team," my MO has been pleasant and compassionate, and answers all my questions, even though he doesn't volunteer a lot. But I don't feel like he's keeping anything from me; I think his philosophy is about telling me what is really relevant, not what-if stuff that will make me worry. I alternate between seeing him and an NP before every tx. She is really good about answering my questions too. I do like them both. But as for questions that come up otherwise, I always talk to a nurse first and they run it past the MO if need be.



Well, on a different topic - my stubble is starting to fall out again. I didn't really have my hopes up anyway, still a few miles to go with chemo, shall we say.

Fierro6

I see my MO before each treatment.  I like her, although our personalities are not a great match.  She's a bit too "pat you on the head and say 'awww'" to suit me, but she takes tons of time, answers all questions, etc.  Between treatments, I call or email and talk to her nurse.  I usually email because it's easier to do at work.

(The personality difference is on me more than her.  I feel like I'm getting pity sometimes, and I don't want that from my doc, but it's just how I interpret her.  She's actually been awesome.  And another thing in her defence, it would be difficult to constantly talk depressing talk to people with a depressing illness.) 

sherryh16

Thanks to everyone for your input.  I really really do feel my treatment is working and that I will be fine.  I just wondered how different treatments are and how we are all doing with them.  I feel my treatment is going fine, I have few, but some side effects, that I can deal with.  Three down and three to go!  I believe I will be free of cancer upon completion of 6th chemo treatment; half way there!  After which I hope to undergo reconstruction, either DEIP or BRAVA fat transfer, unsure until I meet with plastic surgeon for consultation.  I don't have any other symptoms of cancer, no aches, no pains, so I am optimistic I will be fine.  I just over-think everything.  Have always been a planner, a control freak.  I've mapped my life and expect it to occur as I direct it.  HA!  I should know better.  But I've always been a strong person and have dealt with many obstacles along the way and have overcome.  THANKS TO EVERYONE AND BEST TO ALL!!!!

spicedlife

Lisa2012- I read your experiece with your MO and had to stop and post before I finish getting caught up with the other posts.  I have the exact same feeling with my MO.  I have probably not spent more than 20 minutes with her and that is including the first time I met her.  We talked about whether to do or not do chemo and she put it on the boards?  and I wanted to do chemo simply because I have any kind of node involvement.  My Onco score was mid 20's and I don't really understand that but I do understand node involvement. 

The other thing is that she called my chemo chemo light and said things like with cancer we just throw stuff at it and hope it works?  Anyway,

I plan on asking more specific questions and asking for more specific answers! 

The rest is in God's hands.

Fierro6

I love DH.  He really is amazing.  I just got so frustrated with him tonight.  He said he'd shave my head (it's driving me nuts, poking me in the scalp, etc, and there is so little left,) but he fell asleep on the couch and I could not wake him up.  He was snoring so loudly that I had to finish the NASCAR race in my bedroom.

Anyway, I got tired of waiting, pulled the guard off the clippers and did it myself.  It's going to need a bit of cleanup in the morning, but I sure got rid of it all.  When it's all cut off, there was more there than I thought!  It looked SO crappy, though.  The whole top of my head was bald, I had three pieces of bangs, 2-hair sideburns on each side, and the rest was in the back.  It was quite ugly.  

It took a while and it took some contortionist movements, but I did it.  DH is gonna feel bad in the morning, but I'll let him clean it up and ease his guilt.  Now it's time for an Ambien and hopefully some sleep.  Sleep without my head getting poked all night.  Since I've been up for 20 hours, maybe I'll even get a LONG sleep.

Hey, a girl can dream.    I'll also wake up without a pillow case full of hair.  Win Win.

Hortense

I switched oncologists and hospitals as I wasn't getting enough information to make decisions. I can say that I was told by both my first and second oncologists that Taxotere/Cytoxan is considered a medium chemo. Both said CMF was light and ACT was the heaviest.

My first oncologist described all three treatments plus their side effects and then told me to pick one. I thought that was nuts. I am not a doctor. I rely on doctors to make major decisions and deciding on which sort of chemo was best for me was a major decision in my books, not one I should be making on my own. The second oncologist went into greater detail and helped me understand each one before recommending T/C for me. She also said she would allow me to ice my nails - hands and feet - and use cold caps to try to save my hair. I should add that she is the head oncologist at a major breast cancer center in NYC.

The first oncologist, who is at a renown cancer center also in NYC, reluctantly said I could ice my  nails, but also said she and her hospital would not allow cold caps which seems close minded.

I am just about to go for my fourth and last infusion and so far so good. I have had no problems with any of my nails and no neuropathy either. I also have my hair still although it has thinned considerably by shedding, though other people can't tell it's not as thick as it was. 

IndigoMont11

Fierro, hope no more nosebleeds!



Good grief, I'm glad my doctor didn't tell me to pick my tx! Making the choice about surgery was hard but less overwhelming than chemo.

Stacie

Hortense it sounds like a doc who doesn't want to take responsibility for their decisions. I'm with Indigo. My LX VS MX decision was painful. This is not a "do you want fries with that decision". I am glad you switched!

Pauletta

Hi Ladies! I had my LAST A\C treatment on Friday 7-5-2012!!!   I start my taxol\herceptin in 3 weeks. This will be once a week for 12 weeks. I had lots of energy friday (after the chemo) and on saturday til 5:00, then my body suddenly got really tired. I went to bed and slept til almost midnite without waking up. I got so many things done around the house before my body got really tired! I was so happy!! No nausea, just tiredness so far. I am taking my anti-nausea (steroids) 2 times a day for 4 days. Same as the other 3 times I had A\C. My problem this time is everything has a metal taste. Has anyone had that problem before. It's funny, because they are giving me the exact same dosage of everything each time I go in and this is the first time that this has happened. Very Weird. But, I am just praying everytime before I eat and I am telling myself...."IGNORE THE METAL TASTE, IGNORE THE METAL TASTE!!!" I am enjoying my food, but I still taste the metal. 

Hope everyone has a great day!!! 

Fierro6

Pauletta - I haven't had that, but I was warned about it.  A lot of folks switch to plastic forks for a while, and say that helps.  Good luck!

Melrosemelrose

Fierro- Geez... what a wild weekend!!!  Not enough sleep, hair trim (liberating, wasn't it??!!??) and nose bleed.... Hope things are looking up this morning for you. 

Fierro6

Thanks, Melrose.  Mom's having us over for a fish fry later, so I can't complain about that!  I'm just taking it easy, letting myself take pain pills for the headache (to heck with fighting it) and drinking my water.  So far, so good.

chapter4

I've been told I over think things....it may be a control thing...I don't know...I agonized over whether or not to share this information because I don't want people to feel sorry for me...what I do want is to tap into the resources of this board to see if any of you know about what rights I may have moving forward.



I lost my job on Friday. I have great health insurance and have been so thankful for that....but now what? I'm sure I will find another job....in fact someone has already reached out to me....but I don't think they know about my "condition" I still have to have radiation....another mastectomy and reconstruction. Plus like everyone these days I live paycheck to paycheck. I have family coverage to cover my two kids...ages 22 and 19. I am overwhelmed with how to handle this.



Background on my job...I had it for 8 years...a new administration came in and announced Friday that 14 of us will be replaced. I always knew it was a possibility some day...but never imagined I would have cancer when it happened. Am I employable as a person battling cancer?



I know I don't have to disclose it...but obviously people around me know.



I can't figure out why all this is happening.

Marcia1111

chapter4 - I don't know your rights, but wanted to give you my support.  I can't imagine that you are under any obligation to tell a new or potential employee about your dx.  I'm wishing the best for you as you move forward.  Change is hard, especially at a time like this, but sometimes it can bring about good things.  Hang in there and stay strong! 

dancetrancer

chapter4 - I'm so sorry this has happened to you.  I can only imagine the stress you are under.  My thoughts are:

1) Did the new administration know about your diagnosis?  Any chance there was discrimination involved in choosing you as one of the 14 to go?  You are protected under the ADA, I'm pretty sure, as a cancer patient, from being discriminated against due to your diagnosis.

2) You may find some assistance from the Patient Advocate Foundation.  I've heard good things about this organization.  They have case managers that you can talk to to find out your rights and get advice as to how to proceed with new job stuff, etc.  This is who I would turn to first for guidance if it were me. 

I hope this helps.  I don't know why this has happened to you.  Crappy sh*t happens all the time to the nicest of people.  There is no rhyme or reason to it.  It's not fair.  It sucks! 

chapter4

Thanks Marcia....I have faith everything will work out...but im scared to death.

Melrosemelrose

chapter4 - OMG.... sorry to hear about the job loss since I know it probably feels like when it rains, it pours.  However, we are here to support you and hope you'll land that new job quickly.  I don't know if they gave you a severance package or not.  You may want to visit the human resources to check on if you are eligible to keep your insurance for a while under COBRA.  That may buy you some time on the insurance front.  As for handling other things, you can contact the American Cancer Society to see what other kind of help is available to you.  Depending upon where you are being treated at, the cancer center may have a social services department that may also provide you with further information and assistance.  As difficult as it may seem, you may want to sit down with your children and have a heart to heart talk about this latest development.  I'm sure they already help you as best they can but it always helps to have everyone in the household on the same page.  Losing a job is never easy... been there 3 times myself and know that panic feeling.  Hold on..... you will get through this!!!

lisa2012

Chapter 4, so sorry to hear of this stressor. I am sure looking for a new job when you have treatment ahead seems daunting. Melrose and dancetrancers's ideas are good, give you some info. My sister lost HER job right as she was finishing rads. It was tough but she did find a better job that she is still at.

We are here to encourage you.

Gemmie

My heart goes out to you, Chap. 4. I have nothing new to suggest that the other gals haven't already covered. I do think you should follow through on their suggestions, including being open about all this with your kids. And you will be in my prayers for better things to come and very soon!

Gemmie

Fierro , the hair buzz is a relief, I agree. Got mine all buzzed off 3 days ago, much better and less mess, but it is a bit of a shock even when you think you were mentally all prepared for it.

Now I find myself mentally pairing outfits with scarves. I do love the chemo beanies cause they are so easy and come in solid, neutral colors that go with everything. I also bought a great new sun hat with the ribbon that covers lower back of head so no bald stuff shows. I'm doing my best to make the best of the no hair thing.

Days 3-5 were hard for me. Is now day 5 out of chair for me and I am still very fatigued and gastro blocked. Am hoping this goes away today. No energy at all this weekend. Do hope the worst is behind me for this round. Feeling pretty useless right now.

chapter4

Thanks Gemmie, Dancetracer, Lisa, Melrose,....thank you for your support/suggestions...2012 has just not been my year and it's only half over.

nofear2012

Chptr4 - I too am sorry for yur job loss, dealing w cancer is hard enough let alone this on top of it. I unfortunately do not have anymore to offer is advice just support. Talking to yur kids would be the first step. Keeping u in my thoughts/prayers.

chapter4

Thanks Nofear. still looking forward to finishing chemo July 17!