September 2013 Chemo Group

I think I am the ONLY person who does not get SEs from the neulasta shot! And I am very, very thankful since I feel so awful for days afterwards, just completely worn out and tired but no bone pain. 

My next chemo day isn't till Ocotober 3 and I'm feeling pretty good and I'm hoping I stay that way until then.

Hope everyone had a good weekend and here is to a SE-free week.

krizo - I had probably a dozen mouth sores after chemo #1 - my onc gave me some samples of a prescription drug called Caphosol.  It is dual ampules that you open and mix, then quickly swish and spit.  Mouth sores were gone in 48 hours - it worked great!  Avoid acidic foods and try to keep something cold in your mouth (ice chips or popsicles) during your infusion.  Once I did this I didn't get any more sores, although my tongue had a burnt feeling after infusion that resolved before the next treatment - it mostly affected taste but was not really uncomfortable - just weird.

Hello everyone, I haven't posted in a while. I'm now at Day 18 of first treatment. Yesterday, I woke with a very tender head and sadly started losing my hair when I shampooed it. I'm trying to be gentle with my head/hair, but I'm almost certain all my hair would fall out if I kept running my fingers through it. At least the tenderness was only brief and there's been no more discomfort. I'm otherwise feeling great and I'm hoping to get a lot done this week before chemo on the 27th.

EKateria - you are getting the same chemo as me. I did have side effects (difficulty sleeping, lots of energy, weight gain, increased blood pressure and heart rate) from the seroids intially and then my doctor lowered the dose. But the steroids are to help minimize the side effects of the chemo so it's definetly worth taking the steriods. I had a small dose of Ativan before the chemo and that helped greatly to calm me down. I also received Aloxi before the chemo to prevent nausea and then was told to take Zofran every 8 hours for several days. I did great during the chemo and even ate lunch. I didn't eat ice and I never had mouth sores, but I did swish my mouth with baking soda water solution several times a day for one week after the chemo infusion. I haven't used ice on my fingers or toes and so far my nails are fine. I couldn't/wouldn't do the fasting since I'm prone to hypoglycemia and since I had a good experience eating during chemo, I'd like to do that again. The most important tip I got was to drink LOTS of water the day before chemo (helps to make the viens easier to access) and drink lots of water the day of chemo and for several days afterwards to flush out the drugs so you don't get any bladder problems. Plan to drink water even at night. Day 4 was the hard day for me - I just felt sick - but it's hard to describe. Then I've gotten better each day. The gastrointestinal problems are a pain to deal with. Thankfully, I managed to not have constipation or diarrhea. I had high fiber food before chemo, then swtiched to plain oatmeal every morning (I didn't want anything else) after starting chemo, and I made my self eat prunes while I was on the steroids. By Day 4 I was extremely picky about what I ate and drank - the foods I normally love I didn't want and foods I don't normally eat I wanted. It's actually still that way. I mostly crave salty southern food whereas I usually love spicy ethnic foods, salads and lots of fresh fruits and vegetables. I really enjoyed eating at Cracker Barrel last night. I also had trouble with waking up with heart burn and an empty/gnawing feeling in my stomach. This got progressivly worst and I was waking up almost every hour and not sleeping well. By Day 10 I started taking 150mg of Zantac at night and it's worked amazingly well! No more heartburn or gnawing feeling and I've been sleeping great! I was taking Tums before trying the Zantac but the Tums were not lasting long enough. The only other issue for me is that I started getting episodes of achyness and fever around Day 11 without any other signs of illness. MO placed me on an anitibiotic for 7 days and there has been no fever since then. I do take ibuprofen if I start to not feel well and it always helps. I have never had the nuelasta injection and I've been told that I may never need it. I hope and pray all goes well for you. I will say it's hard the first round because you don't know how your body will react. But now that I know, I'm more prepared and ready for the next round.

Kjsimson - I LOVE your blog! Thanks for sharing with us.

I'm hoping and praying for the best for you all! This is definetly not a pleasant road to travel, and it's harder for some than others. Be encouraged that these side effects are confirming that the chemo is doing its job to get rid of the cancer, and thought the SE's are not pleasant they are are only short lived.

I only had pre-med steroids (Decadron the day of chemo in the IV) for the first three tx, but then had a body-wide swelling event and my onc prescribed 8mg twice a day before during and after for the next three tx.  I weigh about the same as you.

Deborahanne, I weigh 125 lb too and am on 4mg 2x a day so 8mg for the day. 

Mamastewart and others interested in the fasting, The clinical trials do not accept those of us taking taxotere and premed steriods.  This is because the steriods 'must' be taken with food.  I asked my onc about this and he said that for the limited time I needed them and the dose I could take without food.  But I guess for some the steriods can damage your stomach lining if taken without food.  I would ask your onc about this aspect before embarking.  Otherwise I fasted 85 total hours (57 before, the 4 hrs during chemo, and 24 after).  I only drank water and took the steriods.  I had very minimal side effects (icky mouth taste and neulasta related bone pain day 7).  Some oncs are really receptive/supportive of this idea and some downright against.  

mamastewart, I have heard a lot about the benefits of fasting as part of a cancer prevention plan.  Dr. Michael Mosley did a few specials for PBS on this idea.  His was more for healthy living not specifically cancer but I think the fasting over your life is for a lot of different health benefits.  He promotes a 2 day (not sequential) per week fast program.  I haven't looked into it much but did at the beginning when I was researching all the fasting literature. 

I will tell you that while fasting you are going to be really tired so prepare yourself and don't plan to get anything but the bare minimum stuff done.  It wasn't a fall asleep kindof tired but but lethargic to the core. And from what my naturopath said the body to go into keotosis not only needs a complete digestive shut down but a calm environment (ie stress will create strain on cells).  I know us single moms laugh at that a little but I did try to truly do only the minimum while fasting.

Good luck and I hope you have minimal post chemo se!      

josgirl - I've told my friends that, too - going through chemo is a lot like early pregnancy for me.  I only got sick (throwing up) once curing each of my pregnancies, and the same with chemo so far.  But the constant queasiness, cravings for salty foods, having to eat every two hours, being so tired, my body just not feeling like MY body.... it's eerie for sure.

KJSimpson (aka Kathryn) - thanks for the link to your blog - you are a great writer so it was fun to read.  I'm going to go back later and read some more. I think humor is so helpful.  I have a CaringBridge site and some of my family and friends have said they feel guilty reading some of my posts and laughing, but to me it helps.  Good Luck Friday with round #2.

LOL - I didn't have kids, so I guess this is my once chance to commiserate with all my mom friends.

The steroids haven't given me any problems (other than acne, I guess), but I've been on heavier/longer courses in the past for other problems & had all the SEs ppl talk about. Definitely not fun.

DebDylan - port is not required, depends on what you & your dr. decide. If you're having a lower # of infusions, your dr. may not think a port is necy (I'm getting 4 total, no port). But it can depend on a lot of factors. I have a needle-phobia, but the infusions have been really easy for me w/out a port. Just have to drink TONS of water the week before to plump up the veins

SpecialK, josgirl, gildedcage, and KBeee - thank you all for sharing your Dexamethasone doses and your weight. My first time with chemo I was given 8mg twice the day before and one the morning of chemo. With that dose, I was hyper, had a 5lb weight gain, increased blood pressure and heart rate. I was also given 12 mg of Dexamethasone IV prior to chemo. Because of my response to the 8mg dose MO changed the dose to 4mg the night of chemo and 4mg twice the following day. MO also gave me a low dose of Ativan IV before the chemo to take the edge off the steroid and that really helped. Now I'm wondering if I'll have more side effects from the chemo if I take a lower oral dose before chemo. I'd rather have the steroid side effects than the chemo SE's.

KBee - that's wonderful that you are doing so well!

hi ladies, I am from the august group, but would like to pop over here if that's ok.....I am getting ready to do my third treatment on thursday.

debdylan - many oncs recommend ports for those getting Adriamycin because if any of the drug leaches onto your skin from the IV needle it can cause burns and damage to the veins.  This is important if you can only use one arm due to surgery/SNB.  You don't want permanent damage in your one usable arm.

This is from www.chemocare.com -

Adriamycin is a vesicant.  A vesicant is a chemical that causes extensive tissue damage and blistering if it escapes from the vein.  The nurse or doctor who gives adriamycin must be carefully trained.  If you notice redness or swelling at the IV site while you are receiving adriamycin, alert your health care professional immediately.

So sorry Michelle! I know it sucks. The thought of losing my hair didn't bother me very much and I was still upset by it, so I can only imagine what you are going through. It will come back though! I say this even though I wanted to slap people when they told me that.  ((((HUGS))))!!!! 

Specialk - Thanks for the advice on the Caphosal...I will talk to my Dr about it on Wed when I see her.  The mouth sores are starting and I want a handle on that because if effects ability to eat.

Michelle - my heart hurts for you on the hair thing.  Hugs to you. Just keep telling yourself this is temporary...just temporary. Your hair will return and it will glorious to watch it come back.  Now...remind me that I said this to you when happens to me...because it is coming.  We will get through this part....

I have had a bit of an emotional day. A long history with my Mom and she just pushed the wrong button today and I lost it. It was long time coming outburst and the day just didn't seem to get any better.  I feel tired and pissed off and a bit defeated.

I have seen the quote on some of the blogs:

"Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow." Mary Anne Radmacher

Today...I feel that way...start again tomorrow.

Hello all, I was gone all weekend for my sister's wedding (which went beautifully), then trying to catch up today - it's become a busy thread :-)

I'm supposed to have my 3rd tx tomorrow, but it's up in the air because of this cold.  Technically I'm better today than I was last week, but I'm nowhere near healthy.  My counts are good, so that's good, but my oncologist may decide to delay a week so I can just get better.  I've been going along saying I don't want to delay, but I guess my true feelings came to light when I thought about not having to do treatment until next week, I became elated, lol.  I'm really nervous about going into tx not feeling well - it's so hard to stay ahead of the nausea, I feel like it takes all of my energy and attention, so how can I do that if I'm already feeling crappy?  But if I delay a treatment, am I putting myself at risk for recurrence?  Uch...

Anyway, I'm doing my best to catch up but I'm still like 3 pages back, lol.  Hopefully everyone is doing well and managing those SE's :-)