March 2012 chemo

Good morning!  Just feel weird today, like my body doesn't belong to me!  My legs and shoulders feel heavy.  No pain just a bit achy.  I think I slept about 5 hours during the day yesterday and slept pretty good last night.  I think I could lay down and take another nap right now!  I hope I have the energy to go to work tomorrow!  I was going to try and go to Target today for a little shopping, but not sure I will make it!

Hope everyone has a lovely Sunday! 

Kind of a fun story from yesterday...I went to my wig shop to have my gorgeous new wig fitted and while the hairdresser took out some of the rows to fit my head she suggested that I go out to the main room where they were hosting a book signing party for a woman who had written a book about moving past breast cancer and treatment. I'm not really the "meet the author" kind of girl, so I just went to hang out with the shop owner. However, I looked over at the book and saw that the author was the wife of my DH's dear friend! When I was diagnosed the first thing DH did was email his friend and ask for advice. Laura immediately replied with all kinds of great advice and a standing offer to be there for me. I had never met her and was touched by her offer, but didn't think I would need it. Turns out all her advice was spot on and has helped me so much. I went up to her and told her who I was and she gave me the biggest hug and cried. She's been following my progress on my caringbridge site and was as thrilled as I was to finally meet. It was a great gift to me to be able to thank her for her support in person.



There are a lot of special people out there that want to help us through this. I hope you all already have or find someone like Laura!

Hello ladies.  Well, I am still dealing with hives!  Benadryl every 4 hours won't even keep them away, but helps with the itchiness.  I did some research yesterday ("chemotherapy reactions") and found all kinds of info.  My onc claimed she's never seen a chemo reaction a week out from chemo, but according to all the literature, it can happen up to 3 weeks later, usually withing 10 days (mine was day9). I'm seeing a dermatologist tomorrow, but will have to get together with onc to discuss what to do next.  I worry with tx 2 that I'll have a worse (anaphylactic?) reaction.  And I sure don't want to live with this rash (and Benadryl-drugginess) for 2 more months!  So frustrating!  I've never reacted to any food or drugs before.  Has anyone else had any type of hives after chemo?

Hope everyone else is having easy SE's...

Amy 

I had a whole, nice long post where I had responded to everyone and all the issues raised.  Accidentally clicked back a page.  Lost it - ugh!!!!!  Let me try again.

Thanks for the input on heartburn - my mom has tons of Prilosec that she can't use so I may try that.

I do think the posting of something good is a fun idea - I also saw another thread where people with bad SE post "one thing" they did that day that made them feel like they accomplished something.  In some cases it may be taking a shower, lol.

Sorry for the bad days Shera and Sissydi...I had a lot of bad moments last week getting on FB and seeing where people were going on vacations with their kids for Spring Break Or just seeing where people were living their normal lives.

Katy - SO glad the party went well...I know that is a huge relief.

Kim - Nap away...Target on Sunday afternoon sounds hideous anyway  

Masserz - that IS a great story!

munnibunny - I feel icky every time I eat - not really bloated or anything, just like I have eaten WAY too much even if I have barely eaten anything.

ladyfighter - what a pain to have to do those shots everyday As far as chemo SE, mine didn't start in force til day 3 but everyone is different.

diamondslayer - I said I was going to do laundry today too...or at least put them in the washing machine, lol (still can't reach with my SNB arm into the washer to put them in the dryer).  Haven't gotten started though.

Amy -

Day 6 post TX here (well 7 if you count the day of TX as day one)...woke up achy and hurting a little but that could be from lying around more than anything.  Starting to get some sores under my tongue and my onc didn't rX the magic mouthwash, just said use baking soda rinse.  I have been using the Biotene rinse...I also sometimes make the one at home using mylanta/benadryl (don't swallow) for my youngest (she gets ulcers/canker sores all the time).  Also getting some weird skin breakouts around my chin/mouth.

Grumpy more than anything today...feel like I am feeling well enough that I SHOULD be doing something but I'm not.  Sitting here watching DVR of last Project Runway All Stars with my oldest.  My parents took the younger one to town as she has allowance burning a hole in her pocket and wanted to go buy some kind of sewing kit. DH is "cleaning" the garage which means he is out there playing and rearranging all his crap that prevents us from parking in there   Labs tomorrow; I am interested to see where my counts will be.

Glad to see this thread.

I started Adriamycin/Cytoxin x4 on February 16th 2012

Will be having 

Taxol x 12 Herception 52 weeks

 My 3rd AC treatment is this Wednesday .  

  Nice to meet you all, and looking forward to know and support each other.

karri - call your MO tomorrow for a prescription for mouthwash. What you described sounds exactly how the soreness in my mouth started. My tongue was super-sensitive and then I started getting bumps on it that were really painful. I picked up mouthwash (Nystatin, Benadryl & Hydrocortisone) on Friday and it has already made things better. I think chemo triggers some kind of fungal infection in the mouth.

Welcome to the new Marchers!

masserz - what a neat story! Thanks for sharing.

for nausea - I read somewhere that drinking warm ginger ale works. Won't hurt to give it a try.

ladies starting and getting tx tomorrow - best wishes and I hope your SEs are minimal.

For all the brave and amazing ladies here - I hope your good days outnumber the not-so-good ones. We can do this!

I think I've lost some taste buds, just had a baked potato and really couldn't taste it at all.  I ate it anyway because I was hungry.  I also noticed my tongue is whitish.  No sores yet, is the white tongue thing a precursor to the sores?  The nurse didn't mention any mouth sores, but I read about them on here.  

 Up from my 3rd or 4th nap today - how am I going to work tomorrow!  UGH! 

Hi Caravanmom - sorry you have to be here, but this is a great group.

 That sounds like a very long day!   

welcome caravanmom - you'll find support here as we all go thru this together!

kim - my tongue turned white before it became sore. Are the insides of your cheeks also white? If so, I'd keep a close eye on it and start the magic mouthwash if you have it..

Cheeks aren't white, I have been rinsing, but was never given magic mouthwash.  Thanks for the info, I will keep an eye on it and call them if I see sores.

Well me and the guys have been cleaning house and doing laundry since I start AC x 4 every 2 weeks tomorrow. Nervous but want to get started so it will stop this from growing. I've been keeping track of everyone's tips and feel I'm a little prepared. Thanks for all the sharing!

Hi Cmclean and ladies

Thank you so much for your best wishes for my recovery after being carted off to the A&E for low neutrophils.

I'm feeling much better, thank you, but am wondering whether I am one of the people who may have a genetic disposition to side-effects..

Has anyone seen this?Understanding individual genetic variation can help predict chemotherapy side effects

Print

Vienna, Austria: The largest study ever on the effect of genetic variability on the toxicity of chemotherapy in breast cancer shows that it is possible to predict which patients are most likely to suffer serious side effects, a researcher will tell the 8th European Breast Cancer Conference (EBCC-8) today (Friday). Dr. Christof Vulsteke, from the Catholic University of Leuven, Belgium, will explain how his team's research is an important step towards achieving a personalised chemotherapy regime for each patient.

The researchers examined germline DNA[1] from blood samples from 1089 breast cancer patients who were treated between 2000 and 2010 with three commonly used chemotherapy drugs (fluorouracil, epirubicin and cyclophosphamide). For each patient, the variability in the genes that are important for metabolising these three chemotherapeutic drugs was compared with the side effects experienced.

"We found that genetic variation in one gene was highly correlated with chemotherapy side effects," says Dr. Vulsteke. "Investigating this gene before starting chemotherapy would allow us to support the patient with either growth factors to increase the patient's immunity, or dose modifications, or a different chemotherapy regimen better adapted to the patient, or a combination of these."

Currently, most patients receive the standard treatment; however, the side effects they suffer can be very different, ranging from severe to very minimal reactions. Making adjustments to treatment would have a major impact on both the physical and psychological well-being of patients, and on the financial burden to society posed by chemotherapy side effects, for example, hospitalisation.

The most important side effects of chemotherapy are mainly caused by immune system depression, which can result in potentially life threatening infections. Even though patients may take every precaution to avoid contamination, the vast majority of these infections are caused by naturally occurring microorganisms in the patient's own gastrointestinal tract. Other serious side effects noted in patients receiving chemotherapy are bleeding, severe infection of the mouth mucosa, severe bowel inflammation, nausea, and vomiting with dehydration.

"Our research has brought us one step closer towards prescribing personalised chemotherapy treatment with a minimum of side effects," says Dr. Vulsteke.

The researchers now intend to look for data from other European countries in order to further validate their results. They will also continue to follow up on their own patients; currently the patients are followed up, on average, for five years.

"In 2016 we will have a very accurate assessment of the impact of genetic variation on breast cancer survival and recurrence," says Dr. Vulsteke. "Our future research will focus on other genes involved in processing the chemotherapeutic drugs that we studied, and we will also enlarge the scope of the research by including other chemotherapeutic drugs where we can hypothesise that genetic variability plays an equally important role," he will conclude.

Professor David Cameron, from the University of Edinburgh (Edinburgh, UK), and Chair of EBCC-8 said: "In the search for ways to "personalise" anti-cancer treatments, much of the focus has been on matching the treatment to the cancer. However it should not be forgotten that we also need to ensure the treatment is "matched" to the patient, and this study is an important step in this direction, potentially allowing us to ensure that standard chemotherapy can be delivered with either less severe toxicity, or perhaps to have the dose adjusted to give maximal benefit. Further studies will be needed to demonstrate that improvements in patient survival can be achieved by tailoring the actual doses along the lines that this study suggests could be possible."

[1] Germline DNA comes from the egg and sperm cells that join to form an embryo, and is the source of DNA for all other cells in the body
[2] Funding for the genotyping in this study was provided by Amgen

Abstract no: 237, Friday 10.30hrs, Proffered Paper session "Patient Related Factors and Responsive Therapy", Hall F1

http://www.ecco-org.eu/Global/News/EBCC8-PR/2012/03/23_03-Understanding-individual-genetic-variation-can-help-predict-chemotherapy-side-effects.aspx

alice - great information. I am part of a university medical study which is examining the effect of chemo on dna. They are also looking at chemobrain as it relates to dna changes (if any) and I think they're trying to find out if chemobrain exists scientifically (we all know it exists!). I took cognitive tests prior to starting chemo, and will take tests before my 4th tx. There's another test time but I have forgotten when it is (chemobrain?) All in all, study participants will be followed for 5 years. I'll be interested in what they find.

sandrav - I've had one A/C tx and worked most of the 2nd week after tx. I'm getting my infusions every 2 weeks and I'm due for #2 on Wednesday. But, as you'll find in our posts here, all of have had different experiences with SEs. I hope yours are minimal.

Okay, there are white patches under my tongue so yep, I will be asking to see a nurse tomorrow after my labs...my mom has the swish that is just the nyastatin that I can use too for today.  It doesn't have the lidocaine or anything in it though.  It isn't really sore except under my tongue for now...I am used to dealing with canker sores too so it isn't unbearable to me but just gross, lol...

Still no appetite for anything normal so I just sent DH to the store for hummus, crackers, cheese dip and almonds.  Weird things that sound appetizing.

Good luck to everyone having TX or port surgery tomorrow...my kids go back to school after being up til all hours every night for a week so tomorrow morning should be fun, fun.  DH gets them up and going nowadays but I still have to help with hair and clothes.  There will be grumpiness.