August 2013 Chemo Sisters

Rayna thanks for the tip for the migraine. The pain meds do seem to be working. Thank God. It makes a world of difference when you don't have a pounding headache. Able to drink more this time since my migraine was causing me such naseau, but the sore throat makes it hard to eat



Sharon: Thanks for the tip. I did call in to the nurses station and an antibiotic has been called in for the sore throat. I will try the soda, salt and warm water as well. I have been eating anything cold like stevia popsicile, jello, pudding and drinking lots of water, Gatorade and Ensure. Anything to keep from dehydrating like last time.



I went for my Neulasta shot this am and took my Claritin and hope for no achy bones and back spasms like last time!



I declare I am getting ahead of these SE and will feel better this go around ! I am feeling better already! Just trying to keep everything under control.



Thanks to all you wonderful ladies for your words of wisdom.... We got this!!

hello ladies.

well the first infusion is done thank God!! It went pretty well, the only SE are a slight headache, nausea of and on the night of the infusion (thursday) . Now this morning a little stomach cramping. I am so thankful for this board. I can read all of your posts and feel like i can relate to all of you. When do you think I should start to notice hair thinning? I have my hair short now, but not sure when to shave it. I have 4 children , twin 14 year olds, a 9 year old and a 10 year old. They are all taking it really well! I just went out and bought some scarves, and a wig. I am going to let the kids shave my head when it comes time. I hope you all have a great weekend with NO SE'S!!!

Declaration for today:  Today will be the best day ever!

What's your declaration? 

I forgot to tell everyone about the funeral we're having today. It's my taste buds. They died this morning. I'm in mourning. I'll miss them dearly. I could taste the banana pancakes this morning, but can't taste anything now. Bye bye little "buddies".

Saltyjack - the Neulasta shot is given 24 hours after your infusion to help "boost" your white blood cells.  I'm doing dose dense AC (every 2 weeks instead of 3).  What is your schedule?  Maybe if you're on every three weeks, that's why they're not giving you the shot? 

Deb - Don't these tough decisions really stink???  You have to take in what your doctors say and recommend, but in the end do what feels right to you.  I didn't really have a choice... Stage 3 with the cancer in my lymph nodes and BRCA positive.... it was chemo all the way for me!

So... how do you know if you have thrush or just the plain old nasty taste buds and white tongue?  I don't have any sores (knock on wood), but I'm only two days past my first infusion and my tongue is white and feels nasty. 

soteria, THanks for the heads up on thrush. I think I'm trying to get it. I do eat Greek yogurt, but have cut back due to the fact that I had chemo Monday and I can't eat the raw blueberried. I'm eating it right this minute with cranberry sauce. I love you! I've already been using the salt and soda mouthrinse and brushing my teeth at least 5 times a day. I use Biotene, too.

SaltyJack, thanks for asking your dumb questions. I need to know how long the taste buds are "broken" as well. I tried to eat vegetable soup I had frozen and it tastes disgusting. I would be sick if I ate a bowl of it. I got out yogurt and cranberry sauce. Those  didn't taste bad. I'm forcing myself to eat, but ghee whiz, that soup is going in the garbage.

Deb, I fall into that gray area. I have triple negative breast cancer and my tumor was only 6mm. THat size is just above the borderline where they give chemo or not. My breast surgeon said I didn't need chemo, but TNBC has no 5-year medication to help it from recurring, and the chance of a recurrence is high with this type. I went to my MO and he referred me to a specialist who called him and recommended the chemo (TC). I asked her if she thought I was crazy for wanting to go through chemo. She said, "Absolutely not." My MO agreed with her and I had my first chemo last Monday. It's your choice, but it's also your life, not theirs. I'm 68, so the surgeon thought some side effects might be worse than the chance of recurrence. I said that I'd rather have permanent side effects than death. Just be your own advocate. Pray a lot. We'll pray for you on this thread. WE pray, pray, pray.

http://katebeatingcancer.blogspot.com/2013/08/a-kick-in-head.html



Hello everyone! I just posted a long update on the blog so I thought I would share for anyone interested. It's so nice to read some of your posts... Just knowing I am not alone on the journey! Hope everyone has a nice weekend with NO/ minimal SEs!



Kate

Lighthouselady: Please be careful with your temperature, I was told if I got to 38 or 101 that I was suppose to go to the ER. After my first infusion about 2 weeks in I got that fever and went to the hospital. They admitted me and I was there for 4 days. There's part of the WBC called Nutraphills that are suppose to be between 1.5 and 5 and mine were dangerously low at .19. So make sure you get to the ER immediately and don't take Tylenol or anything to bring your fever down until you are at the hospital and they give you some. They will do tons of blood work to see what infection you have or you might not have an infection and have Neutropenia, thats when your Nutraphills are really low and you have a fever and good thing for the fever or you wouldn't know about the WBC.

I pray everything works out for you.

Love, Rayna

Lindsey32: oooh I am soooo sorry for all you have been through. I pray you will be able to avoid all the viruses that seem to be going on all around you.

That must have been devastating for you to have your child react to you that way, I imagine it was hard for you to keep it together. Great idea about the erasable Markers though, what a great distraction for your daughter. Has she started to accept your bald head?  I make sure I ask my son about my being bald around his friends everything is sooo hot. He says Mom, it's fine and I have asked his friends if they are uncomfortable if they see me without a scarf on and they all say " No way, its fine) They are 11 so a little more mature. I will be buying a wig to wear around the school as to not embarass my son when I have to pick him up.

I pray that things improve for you, sometimes we get to a point that so much has happened that the only option is for this to get better, you sound like you are there.

Love, Rayna

Lisasp:  I think that is hilariour what your daughter said about HER social life. typical children or teenagers, so caught up in their own worlds. Yes, parenting has definately changed since the BC DX as if it wasn't hard enough but add the BC and see how things change.

Love, Rayna

Day 3 after 1st infusion & *knock on wood* but I'm feeling pretty decent. A little more tired (but then, I've been extra tired since diagnosis), some gas/heartburn (easily treated with Pepsid OTC & eating smaller, more frequent meals). Prob. worst was some diarrhea after eating yogurt, which sometimes happens to me anyway (I'm not lactose intolerant, but my GI system can be sensitive), & let's just say I was glad to have had a squirt bottle prepped in the bathroom for a little bidet action ;-) Took an Imodium (which my GI specialist always says to do & onc said was fine also), & if that's the worst that happens, I'll take it!

Nothing from the Neulasta shot so far either. I'm prone to mild back problems & did wake up with it today, but I figure that's bec. I slept in bed too long. A few minutes w/a heating pad & I felt fine again. Basically, so far SEs have been just mild worsening of my usual irritations (except migraines, so far, fingers crossed! one of the anti-nausea meds is supposed to cause headaches, so I hope I don't need that one).

Hope everyone is dealing with things as best you can. Lots of rest, drink water, & spend time with loved ones. Good luck!!!

Bonski: Hi and welcome! Where in the UK are you? I've got a few friends there scattered about. I love Brits and have been there a few times. Last time (2009) I went to Liverpool since I'm a Beatles fan.



Did you try Claritin to help with the Neulasta? It seems to work well for me.



Deb, it's all so intimidatating isn't it? I am also Stage Ia but my OncotypeDX score was 27 and I am PR-, which concerned my oncologist. I am 53 and had no node involvement and a small tumor but a lot of calcifications.



The recurrence rate for me could be 25% so with that and my MOs urging I am currently on round 2 of TCx4. You are very right to be concerned about neuropathy and if you are not comfortable with this doc, use that second opinion and get another MO. I feel it is of the utmost importance to trust your doc and feel that they respect your opinion. You are putting your life in their hands and I feel you should be confident in them.



Send me a message anytime if you want to know how to find a MO that feels right, if that would help.



Rayna: Yeah my daughter is silly and always amuses me. She's really a good kid but such a tween! I am glad though that she's old enough though to handle a lot pretty well. I really sympathize for those of you with little ones.



Ugh I am tired but can't sleep! I should get away from this board then right?

I think adding chemo only reduces the recurrence rate by 1/3 in an already low onco score.  I was told my my 11% 10 year recurrence rate will be reduced by 3% to 4% to about 7.6%.

I don't think a recurrence rate of 13% can be reduced to 0%.

Welcome DebDylan. I too had a similar decision. My onco was 22. I had no lymph nodes and just one lump with clear margins. My BS thought I wouldn't have to do chemo but my oncologist recommended it because of my age and grade of cancer. I went back and forth. I am pre-diabetic. It runs in my family and I had it when I was pregnant. I have been afraid of the same SE as you. So far so good. I am in day 13 and I did have pains in bones from shot, but the past few days little to no pain and I stopped the pain meds for the moment. I have been worried about low blood platelets. My husband was leaning towards me not doing it, but he said of course he'd support me if I did. I have 3 teenage boys. My youngest is 13. He is my real reason for doing it. (of course the older boys too, but they are almost grown however, if cancer came back in two years...well my 13 yr old would still be young) The real decision maker for me was an old friend. We had lived in Texas for a year and I had a friend who was a nurse. She had kids in school with my kids. I never paid too much attention to what kind of nurse but she is a cancer nurse. She found out about me the night before I had to make my decision and called me. Offered a listening ear and good advice. I asked her what she would do...knowing what she has seen and knows about chemo and the risks...was it worth it for the 5% benifit it gave me. She said if it was her she would do it for the kids...she had kids the same age as me. Like you hear from everyone though...i hated when people said this so I can't believe I am saying it, but it is YOUR decision everyone is different. (I just wanted someone to say You have to do it...or no way I wouldn't) I too will pray for you in making this. It's no fun! Oh one other thing they told me...I can always quit. If the SE were too bad then stop. Believe me after they started kicking in I thought I was going to quit. However, after day 6-7 I knew I could do this and keep at it for 3 more time. BTW I am doing 4 cycles of T/C too. 

DebDylan,

Welcome! Your right the decisions are hard and many times we are left deciding based on our own risk/benefit tolerance.  

 I am currently on week six of twelve weeks of weekly Taxol. I was told that it was easier on your body to take the Taxol treatment once a week, instead of every 3 weeks.

I also take L-Glutamine Powder, 1 tsp mixed in a half of glass of cranberry juice 2x a day, L-Lysine 500mg once a day, and B6 100 mg. once a day. All are suppose to prevent neuropathy and improve existing neuropathy. So far so good, I am halfway through the twelve weeks.

My MO started me on Taxol first because felt there would be less side effects and it would give them a chance to monitor my tolerance.  I am very sensitive to everything they did to me or gave me as oral medicine, reacted to every pre-op cleanser-Hibclens, Chloraprep-with a rash and developed a blood clot in my arm.

They prep my port with Betadine, (old school/povidone-iodine), and I switch to the new chemo. cocktail in October. (Backwards of what everyone else is doing). After finishing chemo completely, then I will have my surgery. One day at a time.

Things are better now, and I am working my way through the Taxol. So I would try to have weekly infusions and use the supplements. Wishing you all the best as you make your decision. Pray, and Good luck!