September 2013 Chemo Group

millsy1

Thanks batcat lady, I'm going yo go to the chemist to get a stool softener. Just can't believe its happened so quick

Viji

Hi Millsy1,

I took senekot the night before and that helped to clear it real quick. I think the idea is not to strain. Also eating prunes, kiwi fruit and walnuts.  And of course lots of water... see I am learning real quick! Day 5 and counting. The heat does not help.

All the best,

Viji

lighthouselady

Yep - I've had the same thing - a little blood on the toilet paper.  I think it's just so easy for our bodies to bleed, that any little strain can cause it.  Plus hemmoroids if you have them.  Just be extra careful when wiping and try to not get constipated.  If you see blood IN your stool, then you should call the doctor ASAP.

alfranco - I totally know how you feel.  I had a couple days of complete meltdown this week.  The catalyst was knowing my hair was going despite the caps, but I think it was really a lot of just letting out my emotions.  Most of the time I just go about my business and put on a happy face, because I've really been feeling ok for the most part.  But every now and then it all hits me and I realize I HAVE CANCER!!  And I hate talking about it with anyone other than on here, because I don't want to freak them out or have them feel bad or think I'm going off the deep end.  Sometimes I just need to be sad or mad or emotional or whatever.

Well, the sleepies continue.  I took a 4 hour nap today.  Sheesh.  My nausea kicked in around 10 this morning, but the meds have been keeping it subdued and I've been able to eat, so I'll take it.  

JellyK - that's funny that our cycles are synced.  I get what you said about liking how your body is still working despite the cancer.  I just kind of freak because of being ER+.... I don't want any extra hormones running around feeding the cancer that the chemo is trying to kill!

batcatlady19

Oh yes, it's amazing how fast all these things pile up! I feel like every little part of my body wants to rebel in some way, some how, at some point thruout all of this. It's crazy.

I'm with everyone about being emotional too. I get snippy with my husband & feel terrible about it, but I'm just so cranky all the time. Everything hurts or I'm so tired & can't do anything normal. I'm so frustrated & so tired of my life being upended by cancer.

millsy1

Thanks viji, I talked to them at the chemist and they gave me a stool softener. Need to keep an eye on the stools to see if they change colour. It's an indicator of how high up the blood is coming from.

Batcatlady19 and lighthouselady: sometimes I find it hard being a mum of 4 and use to doing everything and the running around and I know I'm going to have to stop. It's all ready getting to me and although my husbands wonderful its going to be hard on him having to do it all. I get frustrated easily and will just end up doing It myself. I think its young to be a long 12 weeks. Thank goodness I have this group to vent with.

SpecialK

Keep in mind that chemo damages all soft tissue, the GI track from mouth to you-know-what is affected - often you will bleed just because the tissues are injured from normal function. Sorry if this is TMI but also use Aquaphor or Vaseline in that area to keep it soft and pliable - the further you go in treatments the more dryness you can have, and end up with fissures - not good!  Keeping up with fluids (everything counts - popsicles, juice, soup, etc.) throughout the time you are receiving chemo is also a good idea, not only to flush the chemo out, but to keep all your skin hydrated.  Those of you on Adriamycin should probably use a squirt or spray bottle because just like A can burn your veins on the way in, it can burn that area on the way out.

kjsimpson

Hang in there alfranco.  Vent all you need to here.  {{{{alfranco}}}}

Your children love you and are worried.  That is natural. But, of course. you know that.  Do you have extended family or some of their friends parents that can help clue you in on what is bothering them the most?  My son (18) talks to his best friend's mom because he doesn't want me to know he is worried.  She sometimes gives me good clues (without breaking his confidence) about what is really bothering him.

Also, both of my kids are taking turns being at chemo with me.  It gives me good opportunity to talk with them about life in general and get a sense of what might be bothering them about this detour.  Today my son met our oncologiest.  Through Heavenly Father's humorous generosity, he actually met him in the cafeteria, before he met him as our oncologist.  Apparently they were talking football (my son had his HS branded shirt on) and realized they had already met in the cafeteria when I introduced them.  That helped Tom, in a funny way, respect the doctor more.  After all, the doc was a football fan.  :-)

I will keep you and your children in my prayers (if that is ok with you).  Stay strong and breathe deep.

kjsimpson

{{{{batcatlady1}}}}

soccermomof4

alfranco - That breaks my heart about your 6 year old. Try to keep it as postitive as you can, I try to throw some laughs in there when I can, but there are times they see me cry too. It helped my younger one who is 10, to have somekind of guide line, like right now he knows I should have my last treatment on dec. 31, right after christmas, so it helps him see this won't last forever.

    Simpson - that is neat your kids are going with you - My oncologist actually suggested I bring my kids, that it gives them a sense of what is happening there, I would have to get them out of school though to go. But our youngest child is adopted & he has had the worst of it with the worrying, so I might try to take him whne I can get him from school.

alfranco

Thank you all.Kjsimpson I always welcome prayers, thank you. Hope everyone is doing ok. Thanks for letting me vent, I needed it.

Deborahanne

alfranco and others - love and hugs to you and all who are struggling. Cancer is frightening to all of us, our friends, family, and children. Just the word shouts out pain, suffering and dealth which leads to fear, worry, and a multitude of other difficulties. For some it's harder than for others, often one's personal expereince and knowledge of others with cancer whose outcome was not good, taints our hope that there are many who do well and survive. Also, the support system is vital to coping and that's certainly where this forum helps. Many of us feel very alone dealing with cancer because none of our personal friends or family are going through this whereas on this forum others are. For me my faith is what strengthens me. God is the one who comforts and sustains me - He is the one who is getting me through this and that is helping my friends and family. I'm not saying it's always easy, but God has clearly helped me and blessed me through this time of affliction. The blessings have greatly outweighed the pain, suffering, and fear. God has been most gracious and merciful and He continues to be. Even now after having my second round of chemo, I'm not feeling well, but I know my God will get me through this. My focus is on Him and His promises. This time of pain and suffering is only brief compared to eternal life in heaven where there is no pain, suffering, or cancer. We are weak on earth, our families and friends are weak, we all need strength. If God was not in my life, I could not cope. I've seen too much pain and suffering especially caused by cancer. I'm praying for you, your family and for others that the God of hope will lift you up and strengthen you and your family. Even little children can understand who God is and that he cares for us. I've been so touched by little children who have prayed for me and reminded me that God is taking care of me and that everything is going to be ok. Children are such a great blessing and one of the ways God brings comfort to us.

Deborahanne

Kjsimpson - I love how God works things out! That's wonderful about your son meeting your oncologist in the cafeteria! I hope you are doing well after your chemo. I felt well yesterday on my chemo day but have been dealing with almost constant nausea since the middle of the night. It seems this second round it hitting me a little harder, but I'm trusting God's grace and provision will get me through this.

knightzoo

I feel like I posted something yesterday and don't see it - chemo brain!

So again - lighthouse, I'm praying for your friend Allyson and her family.

Mankato-my 18 year old is a senior but is living with a host family 300miles away playing junior hockey.

kjsimpson-love the note! So sweet.  My center doesn't allow kids under 12, but so far they've been in school.  I don't really know what to say to the 3 year old - liking the words the preschool teachers used.  It's weird that I wasn't sick before and now I'm getting medicine to heal me that is making me sick! She doesn't like my short hair, she liked to play with my long hair.

alfranco - send hugs and comfort.  I have good days and bad and just try to go with it.  Walking helps.  My friends had a PINK theme party for me Thursday night.  It was so great to be surrounded by love and comfort, but overwhelming, and I cried as often as I laughed.  I never ASKED to be the guest of honor at a pink party!

Nail info: My center gave me a bottle of Nail Envy by OPI.  You apply 2 coats on day 1, then a coat every other day, and restart on day 7.  She said it really helps with nail problems.

Slept "some" last night...I think it was the double dose of Restoril.

Have a good day, sisters in pink!

knightzoo

Oh, I also had a question - if the goal of chemo is to attack the cancer, why is the goal to drink water and flush it out quickly? And if it's gone in a day or two, are the SE later in the week just the body recovering from the attack?  Just trying to wrap my brain around what is happening in my body! Thanks!

SpecialK

knightzoo - my oncologist used an analogy regarding the SE from chemo - he said it is like being shot with a gun in the shoulder.  Chemo is the bullet.  From the front your shoulder doesn't look that bad, a little bullet hole.  When you turn around and see the path the bullet traveled through your body causing havoc and the big hole in the back of your shoulder from the bullet's exit - that is the damage done by chemo, and the bullet is already out and lodged in the wall behind you.  His point was that chemo does its work quickly, causing cell apoptosis in the process, but unfortunately it is damaging other stuff simultaneously.  It is that damage that causes the SE, and the reason recovery takes a while.  Drinking is two-fold, to maintain hydration - which has an effect on nausea and elimination - and to flush the residual drugs out.

knightzoo

Thank you! You are so sweet to answer all of our newbie questions! That explanation makes sense, the SE on days 3 and 4 as my body fights back to find the "normal" I feel days 5-7! Maybe I won't worry about "overwatering" since I haven't had any dehydrating episodes. 

I think I'm going to buy some B6 and glutamine today, I'm worried about this neuropathy/tingling becoming permanent.  My MO said no to any anti-oxidant supplements, but I see many others say yes?

VintageGal1111

SpecialK

 spot on with this analogiy! This is how I will think of it.

Thanks

kjsimpson

Soccermom...,
Attending also helps them feel like they are able to help. My daughter has a wonderful boyfriend who told her that no one should go to chemo alone.  I've refused everyone except my kids.  They tag team it, when both are available.  Since it takes about 4 hours, one takes the first 2 hours and the other takes the second two hours.  My son (18) is the more medically sensitive, so I make sure he is out of the room (cafeterias are good places to send them for an errand) when they are accessing my port or injecting me initially.  My daughter (22) is much more easy going about stuff like that, so she stays in the room.  You will know your kids' strengths and weaknesses and what is best for them.  After all, you are their mom.  :-)

knightzoo,
I have my smartphone during chemo so I take pictures.  I bet your 3 year old would like to see pictures of you in the chemo room so that she has a positive visual image that you are going to a pleasant place, with snacks, a nice view, friendly people (sharing their names will help her connect that good people are helping you).  I try not to include people in my pictures without their permission first.  If I do happen to capture a person I didn't ask, I try to crop them out.

Even with my 22 year old daughter, I took some relatively modest pictures of the cancer (IBC has a visible rash and I cropped them just to the rashy area), and that really helped her understand and feel more comfortable with the reality rather than the fear of the unknown. That was the night we found out.  After she had a chance to process a little, she came to me and asked good questions and I offered to show some pics (too modest, even with my kids, to whip out my breast).

I bet for your younger ones, you could even take pictures of them to let them know you are going to show them to the great people at chemo to get to know them too.  :-)  Maybe her preschool teacher would let her organize a group picture so that she can look at it and know that she has a good support group of friends too... and you will share that with the chemo team. 

alfranco,
Prayers going your way!  In fact, I'm praying for everyone in our group every day.  Heavenly Father knows our struggles and our strength.  Keep the faith!!

knightzoo,
About the antioxidants, my oncologist said "NO!" too.  Yes to whole foods and naturally occurring antioxidants in those whole foods, but strong doses of the antioxidents dilute the effects of the chemo.  I'm going to trust him and I quit drinking the antioxident rich power juices.  Milk, veggie juice, and limited fruit juice (calorie laden) are my choices right now.  I'm usually a power soda drinker, but for the first 10 days after chemo, it tastes horrible.

Everyone,
I serve on our local school board of directors and we have "Kids at Hope" in our schools.  They have a great motto that kids in several of our schools recite everyday (right after the Pledge of Allegiance).  I modified it a bit to remind me to keep up the hope...

A friend suggested replacing the word "Survivor" with "Patient", but I'm not sure. I also need to take out the "and" after optimistic".   What do you think??

JellyK

SpecialK, thank you.  I find myself looking for your answers like I would an answer from my oncology nurses, lol.  Do you have medical training or are you just good at understanding how all of this works?

Kjsimpson I love that pledge - if it were me I'd leave it as Survivor, Patient has a negative image for me.  We are all survivors from the minute we are diagnosed, and I love that word.  Your description of being modest even with your kids made me giggle - I'm exactly the opposite, I whipped out the "sick boobie" all the time, lol.  My kids are little though and I'm a single mom, so they've seen it the whole time, from the biopsy horror to the mastectomy scars.  This will probably make you cringe, but I also had any friend who was willing feel the lump before my surgery - I figure how often do you get to feel a "bad lump" and I wanted my friends to know what that felt like.  My friends are all either current or former theatre artists though, and we're a pretty open bunch :-P

Pam358

Thanks JellyK and Knightzoo for your insight on the nausea!

SpecialK

vintage - he also used one that compared chemo to the bombing of Europe during WWII - chemo is the bomb, the recovering is like the rebuilding of the cities after the war!  He is an interesting guy and I really like him - encouraging and funny - he high-fived me at my last chemo, lol!

knightzoo - I used 30g of L-Glutamine, B6 capsd and 1500mcg of Acetyl L-Carnitine durng chemo with the blessing of my onc. None of them are antioxidents - L-Glutamine is an amino acid (a protein) which helps muscles recover and assist in healing so helps all that soft tissue affected by chemo and helps with neuropathy prevention, B6 functions to assist with amino acid usage by the body and aids the liver which is processing chemotherapeutic agents and could use some help, and the Acetyl L-Carnitine helps the neural pathways so helps with neuropathy prevention and "chemo brain", so all useful during chemo.  My onc did not let me take any antioxidents though - I don't think many do.  Also, a word to the wise - do NOT mix the L-Glutamine into something like applesauce or pudding - it tastes like chalk - I dissolved mine in a drink - 10g, 3xdaily.

Something to think about when bringing children, particulaly young children, is that you are exposing immuno-compromised patients to potential germ carriers.  This is one of the reasons many centers do not allow children.  Also, some of the folks in my center, it was communal so all the people in one big room, were quite ill so it might be a bit scary for kids.  You don't want to expose kids to much sicker patients and frighten them into thinking this will be happening to you too.  Just a thought...

jelly - what a nice thing to say!  I am so pleased that you feel this way!  I worked in Transfusion Services in the hospital where I also had surgery.  My FIL/MIL are doctor and nurse, BIL/SIL are doctor and nurse, another SIL is a nurse, and both my dad and brother were stage IV cancer patients, so I have gathered a lot of knowledge between all that and my own quest to understand breast cancer.

bondsy

Thank you for all your advice! I will have my first chemo next Friday, Oct. 4th. This week I'm planning to go shopping for all the products that have been mentioned in these posts. These are some of the things I've read about from you all to help with side effects, and please let me know if there's anything else that would be good to have on hand! Thanks!

Claritan

Biotene

Tums

Visine

Colace

Immodium

Probiotics

Advil

juices, soups, prunes

Icebreakers spearmint mints

soft toothbrushes

Anything else??

soccermomof4

Special k - Yes, that is a good reminder about not bringing the kids in. I have a seperate room, so I guess that would be ok?

Shalimar630

SpecialK: Thanks for all the info. You will probably end up being our "go to gal" for further information!

JellyK: I think that was marvelous that you shared your lump. I think that is the uniform question, that most do not really know what it feels like. I actually still don't really know what it feels like, I just had a sore spot I kept noticing.

On the feeling moody. I have had a pretty down week. Maybe too much time alone, but it just sometimes seems too much to handle. I don't have very many people to vent to. I feel I have to edit what I share with my husband, as he doesn't want to hear dome and gloom. I also understand his side trying to stay upbeat. I have worries, and yes, I wonder if I am going too much the opposite direction. It just seems to have hit more in the last week. I've been one step away from panic attacks, hyperventilating, and have been taking some of the meds the doc gave me a month ago for this purpose. Not sure why now. Enough of this.

I have tried to keep busy (alot of TV lately). My 3-year-old grandson and I went out shopping yesterday and we went to a Halloween store. I was actually considering getting a fun wig there. Was looking at just a shoulder length with bangs the resembles my usual style. It was purple. But when I asked my grandson if I should get it, he was adamantly against. So I guess something is going on in his mind.

My 3rd fun day is coming up next Tues 10/1. My mouth ickiness and soreness was much more pronounced last time so I'm planning on starting rinsing right away and hope I might keep it from getting too bad. I went to Walmart yesterday to get more Biotene toothpaste and they were out. Does anyone know any other place to get it? I haven't seen it anywhere else.

Is anyone having sore throats off and on? I keep thinking I'm coming down with something, but nothing else develops.

Not looking forward to going to a relative birthday party tonight and answering the basic "How are doing?" questions either.

Wishing everyone a peaceful weekend. We are currently having a rain/wind storm.

Shalimar630

Bondsy: Do you have hand sanitizer? I carry it everywhere. Thermometer. I also bought some face masks, just in case.

SpecialK

shalimar - if you all have questions - please ask!  Your throat may be sore from soft tissue irritation - not necessarily the development of an actual illness.  You can order Biotene from places like www.drugstore.com or www.amazon.com and they can get it to you pretty fast, particularly amazon.  Just type Biotene into the search bar.  I was able to find Biotene products in my regular grocery store.

soccermom - your call on the kids, especially if you think it would be helpful to them to understand the process and it would not scare them.

bondsy - be careful with the Immodium and/or constipation stuff - unfortunately, you have to go through the first tx to find out which products you will need, unless you already know which tendency you normally have.  I had the Big D after every tx, I would have been in huge trouble with Colace and prunes!  I never needed any of the products for constipation.  Like, ever.  I might also avoid Visine - Taxotere will dry your eyes and the vaso-constrictor in Visine will make that worse - look for lubricating eyedrops.  It seems counterintuitive that dry eyes produce tearing but that is the case.  I never had heartburn so didn't need Tums, but if you are prone to that normally you might. Mints might be an issue also - mint flavoring burns (as does mint toothpaste) so if you are having heartburn this will make it worse - hard candies, like fruit or butterscotch, might be better.  I wish I had bought stock in Aquaphor - I used a bunch of it.  I put it at the corners of my eyes and under my eyes because Taxotere causes involuntary tearing and the salt from my tears irritated the skin.  I used q-tips to put it up my nose (I know, TMI again!) but my nose cracked and bled inside, and this really helped.  It also helped because you will lose all your nose hair - nothing to stop a runny nose and the aquaphor slowed it down, so also keep tissues handy - preferably the type with lotion.  The longer I went into tx I also had cracking at the edges of my fingernails and on my feet.  I slept with Aquaphor slathered on my hands and feet and wore cotton socks and gloves - that helped a lot.  After a while I was just putting Aquaphor everywhere, lol! 

kjsimpson

JellyK,
My kids would freak out just seeing me in my underwear.  ;-)

SpecialK makes good points about kids that are sick and what they see too.  Might be better with the pictures so you can control what they see and keep the germs out.  I am very grateful that my kids are older.  They can drive and are independent.  Love that they care so much to adjust their schedules to be my chemo sentries.

Shallimar,
I am having dry throat a lot.  Milk, ice cream, and butterscotch hard candy seem to be the best.  Oh, and Ricola lemon mint drops.  Yeah, the mint seems counterintuitive like SpecialK said, but it is the exception that makes the rule.  Chewing gum helps a little too, but the milk and hard candy are the best.  By the way, I'm up in the Seattle area and we are getting squalls too.  :-)

Jane2793

Hi, I had my first treatment on Thursday. The nurse said Thursday and Friday would be good and I could probably get a few things accomplished. I took my migraine medicine which was probably the mistake. I think the anxiety of the first day just threw me. Saturday has been a little nausea , but mostly sleeping. I am worried about the mouth sores and when those might begin. I have never been on a forum and am not quite sure how to navigate through this in order to see any responses or do I just scroll until I see something related. I have been stalking since I was diagnosed and have discovered a wealth of info. Thank you to everyone.

lighthouselady

Shalimar - I've seen Biotene at the grocery stores and pharmacies like Walgreens, CVS, etc.  As for the sore throat... yep, I get one after each chemo treatment.  I have one right now.  I keep waiting for a fever to show up - hopefully it won't!

SpecialK - Thanks for the aquaphor tip, especially around the eyes.  I always have watery eyes anyway, and they have been tearing up more than usual during chemo.  It makes the skin at the corner of my eyes very sore and agitated.

Still feeling exhausted today.  I'm taking my nausea meds on schedule so that's probably why, but good Lord I'm tired of sleeping!  I guess my daughter doesn't like my hats... she has a friend coming over and she asked me "Has Kira seen your hair like that?"  I said no.  She just looked at me.  I told her I could put my wig on and she said "I'll get it for you".  LOL   I know it bothers her that I lost my hair, but it would be nice to be able to be comfortable in my own home, you know?  She's a very sensitive 7 year old so I have to just look at the bigger picture.

lighthouselady

Jane - if you go to the bottom of this thread you can add it to your favorite topics.  Then if you click on Favorite Topics you can add an email notification.  Then you'll get an email whenever someone posts on this thread.  Or you can just keep coming back to read it.  I'm sorry you had to join us, but welcome.  I didn't get any mouth sores after my first AC treatment, but I got them after the second.  And the nurse told me the same thing - I'd feel ok for a couple of days and then it would hit on the third day.  Not true.  I am miserable (nausea/fatigue) three hours after each chemo.  The nausea lasts for the next two days, but by the third day I'm feeling better.