September 2013 Chemo Group

Ok ladies, you need to see this - this is a link to a blog site of a young woman who is a member of our 'club'.  She documented her year long fight in pictures, and then time-lapsed them together in a one minute video.  It is very powerful, it was emotional for me to watch as i related to the drains, baldness and everything else, and overall very positive as you see her starting to look healthier and see her hair growing back.   She warns all that it is not for the squeamish, but the 'kickers, screamers and drinkers'.   

Stick around and read her blog, it is pretty great.

http://rtonj.blogspot.com/2013/09/the-last-year-in-one-minute.html

Peacock girl - to continue the discussion on the flu shot. My onc told me to get it 2-3 weeks after my last chemo but STRESSED that my other family members need it now. I have a child in daycare so lots of germs. So I'm following that advice. He actually said that it is not so much because of the compromised immune system but rather that chemo kills the cells (T cells I think - don't quote me!) that process the flu vaccine. So it becomes less effective and still can make you sick (like it can in an otherwise healthy person). So my fiancée and daughter will get it soon and I will get it in December.



KJ - sisters in furlough I guess. Same boat. I am glad you brought up the addiction question. I (very thankfully) don't have much experience with it but have thought about it a lot since starting this journey (first time given real medication) and I don't give advice on stuff I don't know. Mamastewart - thank you for your story and advice. Seems very sensible and thoughtful. I am really scared of this and so have avoided most meds since the surgery and trying to deal with everything as best I can with more natural or less strong meds. That being said when I am in pain or nauseaus I don't hesitate to take them as my threshold is low! This is a good and needed discussion to have and really thank you for bringing it up.



Sgyukon- I saw that on YouTube too. Really powerful and simple message. Good to share - and she's about a year I think past us so nice to affirm that life goes on.



Taguekids- kudos to you. Keeping a family together is wonderful plus having a baby in the house will be life affirming. My 2 yr old really helps me see past myself and to be honest, let go of my self pity and anger. I can't comprehend the added work with all your other children but I think sometimes we let all this take over our lives (speaking for myself mostly) and she takes me out of my head to remind me the whole world still has a life. Bless you!



LHL and kbee - thanks so much for all your posts. I love reading them and am learning a lot from you!

KJ - I'm sorry that you have to be concerned about addiction as well as breast cancer.  One thing you might want to consider is choosing one doctor to monitor your meds (probably MO). Then, let  that Dr know exactly what you have been given by others and that you are concerned and want them to pay close attention. When they are aware they can work on prescribing medications that are less addictive than others. One thing to watch out for is if your designated Dr doesn't want you to have a potentially addictive drug or a refill and then you go to another Dr to try and get that same medication. This is not about seeking a second medical opinion but seeking out the drugs.  It sounds like you are on top of things and that is the most important part.

Hi, all.  Hope this week is treating everyone well.  Thought I would chime in with a bit of a Taxol update.  I had my third weekly treatment on Monday, and I have a new side effect.  My palms are itchy.  There's no redness or any sign of irritation, but my skin itches.  It's sort of random and scratching doesn't really help. The itching is fairly intense, so I'm thankful it isn't too widespread. It was the worst yesterday and seems better today.  The skin on my hands also seems sensitive, for lack of a better word.  So far, my hair seems to be holding.  Not sure how long it will last.  At this point, I'm driving myself nuts over whether the Taxol is doing anything to shrink my tumor.  I poke and prod all day long trying to see if I can feel a change.

I've heard that about Melatonin but haven't tried it.

not quite as emotional today.  Looking forward to being done with work and having an evening of quiet (my kids are all busy with activities tonight).  Also just got permission to change up my work schedule-hoping that will help with the exhaustion that hits me as soon as i get to work (or maybe it's just the 1st week after chemo).  Trying not to think about what dose #2 will be like.

Hate being a part of this club, but love the strength of everyone!

Alisha - I'm cutting and pasting your post so I remember what you said.  I'm sorry your mom had a hard time.  Unfortunately it hits some people much harder than others.  

 So was the sickness on Saturday from the chemo? or Neulasta?
I would say from the chemo.  The nurses told me I would feel ok for a couple of days & then day 3 it would hit.  That seems to be true for most people (not me, mine hits the same day).   The Neulasta can make you feel bad, and especially with fatigue & bone pain while your bone marrow is working hard to make new WBC, but I don't think it's supposed to make you sick like that. 

Is round 2 of A/C supposed ot be better or worse? I saw someone wrote in this thread that there should be a noticable difference in SEs but I wasn't sure which way.

I have had 3 rounds of AC.  I can't say they have been WORSE.... my side effects like nausea and fatigue seem to hang around for a day longer each time (it was 2 days the first time, 3 days the 2nd and 4 days this last time), but by about a week later I'm feeling pretty good each time.  They do say that as you go through the rounds of chemo, the side effects are cumulative, so in theory you will feel worse and worse as you go along, overall.  

Today is probably the hardest day for her because she is getting her head shaved and her wig put on. She has been dreading this since her dx. How can I support her?

I wish I had some advice for that.  I waited until my hair was coming out in handfuls and by then I was SO sick of shedding, I just gave my kids scissors and let them have at it.  I think I would have had a harder time if I'd tried to shave my full head of hair. Maybe some of the ladies who have done it that way can offer some advice. 

She also found out today that her white blood cell count is low (CBC was taken yesterday). They are hoping it's back up in time to do her second dose this coming Wednesday. Anyone experience this?

Days 7-10 are supposedly the lowest as far as blood counts.  That's been true for me.  At one point (day 8 after my first chemo) it was only 800 (Supposed to be around 7000).  Mine have always been back up high enough that I was good to go for the next chemo.

KJ: I have taken sleeping aids on and off for years. Also antidepressants. There are several prescription sleeping aids: Sonata and Ambien are just two. They can be psychologically addicting (ie, you may convince yourself mentally you can't sleep w/o them) but for me, they never have been.



Lorazepam, or Ativan, is generally prescribed as a fast acting anti anxiety drug, not a sleeping aid. It is also prescribed as an anti nausea drug to help with chemo.



Percocet is an opioid narcotic used for pain. It is physically addictive, and is not prescribed as a sleeping aid. It is in the same class as Valium, but stronger.



My advice: Don't use opioid narcotics for anything but pain relief and use them sparingly. If you want, try a prescription sleep aid and only use it short-term (as prescribed by your MO or other doc).



Alternatives to that could be melatonin, or Benadryl, NyQuil or Excedrin PM. Exercise early, no caffeine after 4 pm. Whatever meds you use, either prescribed or over the counter, let your MO know.

Peacock and anyone else mentioning the flu shot: I have taken the flu shot for years as I get the flu easily, plus I have asthma. The nurse prac said the office does not want any of their chemo patients getting a flu shot during chemo. So they told me two weeks after I finish.



Also we are all immunocompromised, a category that includes the elderly and infants. Everyone coming in close contact with us, especially children, have to get a flu shot. Not to be too scary, but a serious case of the flu has the potential to kill us.

knightzoo - I had BRCA testing done when I was having all my other tests after diagnosis. I am BRCA 2+.  

Alisha, LHL had great advice. I'd definitely try different meds next week to try to stay ahead of the nausea. Maybe you just need to find what works for your mom.



Lengbong, I'm shocked the ER didn't help you. Can you call your MO? My stylist told me Nexium helps with sensitive scalp, but don't know about itchy?

Hi All,

I survived TC#1!Today is day 11. Thank you everyone for all your insights and advice that helped me get through this.

SpecialK you do have a PHD in this area!

Have a good weekend everyone. It is spring here and the weather is lovely.

Viji

Lengbong:



Call the MO -- isn't there an on call doctor? If not, call your primary care physicians on call doc. For those of you w/o access to an on call doc, I am really surprised. Every doc I have (including my child's pediatrician) has an on call doc.



Is medical practice really like this?

Any sypmtoms?

Hi Ladies!

I am new here. Started first round of chemo Sept 26th.