April 2013 Chemo Group

Got my port placed today.. Wasn't a bad experience..

Also-- did the buzz today.. Hubby took out his clippers and buzzed it all off on the deck. I've got about 1/2 inch of hair on my head..

I handled it surprisingly well-- and my head does feel so much better!

Hope those bandanas I ordered from amazon come this week!!

Kerri

Amy, wishing you good, clean scan results! Hugs, Sandra

I saw my RO today. Great experience. All the staff was so nice and they gave me a tour of the facility. I will be having my CT planning next week Tuesday. Rads will probably start early July. He said they like to wait a month after chemo ends so your body can recover. Looks like I'll have 33 treatments. Getting anxious to start this. That much closer to being done with all this cancer sh*#.

chemo brain.  I have no idea if this pic will work, but it's how I went to the store the other day.

PET/CT showed uptake activity has slowed & tumors have been shrinking so we'll go ahead with 3 more of the same poison cocktails.

Chemo #4 tomorrow.  I choose to be positive & hope that those of you who posted that #4 wasn't as bad are right.  Yeah, yeah - each person is different & each treatment is different.  So sue me !!  Tonight i choose to see the glass 1/2 full.  I stay overnight by the med center since my chemo is 8-9 hours then Neulasta Thursday.

Steriods didn't give me that "superwoman" kick today.  I was planning to get lots of cleaning done, oh well...  At least I got the sheets changed - oops, washed but not back on the bed yet.  Off to pack my chemo bag & get the cooler ready for the peas.

Amy and Minustwo. Great news!. I am so very happy for you!



Minus two...glad that you are optimistic-good reason for that. And who said that a roid rush means you have to clean house with it?



Best to you both and thanks for sharing good news.



Sandra

Hello Ladies. I posted this in another group yesterday and received 0 replies. So I am hoping someone over here can help.

This is my first post andI wasn't sure where to post this, so I chose the triple negative section since my wife has TNBC. She has done 4 rounds of dose dense A/C, and so far 2 rounds of 12 weekly Taxol. The A/C was hard, but she handled it pretty well. Her biggest and most annoying Side effect is terrible dry mouth. She has lost all taste for food, and eating is now a once a day chore. She has tried Biotene Mouth Wash but that  and nothing else seems to be helping her. She dreads even sticking a piece of candy in her mouth at this point. Has this happen to anyone else? If so is there any decent remedies? How long before any food taste good again? 

hubby - has your wife talked to your doctor about this?  There's no reason for her to have to suffer through this will all the prescription remedies available.

I haven't had to use it myself (yet), but I hear that something called magic mouthwash helps tremendously and is available at the pharmacy. 

I hope your wife finds some relief from this, please encourage her to talk to the doctor about it. 

HelpfulHubby, sorry to hear your wife is having so much trouble. If she is having pain when eating, then definitely call and request the numbing mouthwash right away (my MO prescribed Stanford mouthwash). You should also have the MO examine her to make sure she doesn't have thrush.



Here are a few things I found helpful. When I am getting my infusions, I constantly sip ice water. Only need to do this during the actual chemo drugs, not the premeds. This decreases circulation of blood to the mouth, thus less damage to the cells there.



I found just plain baking soda worked better as a mouthwash for me than the Bioteen. The recipe I was given was: 1 Tablespoon Baking Soda, 1 Teaspoon Salt mixed in 4 pints of water. I just usually mix about 1/4 teaspoon of Baking Soda in 1/4 cup water each time I need it (I omit the salt due to high blood pressure). I use this several times a day, and always after I eat.



I did find using the Bioteen toothpaste helpful, as regular toothpaste seemed to irritate my mouth.



To deal with the taste problems: Using plastic (or any non-metal) utensils is helpful in reducing taste problems. Distilled water for drinking is good too.



Blender foods are good if it is painful to eat. Smoothies are an excellent choice (I would stay away from acidic fruits, such as pineapple). You can add protein powder to them for an extra boost. I also found scrambled eggs and re-fried beans to be good food choices. I find soft cheeses good too; goat cheese is my favorite. As a last resort, the liquid meals (such as Ensure) would at least get calories down.



Hope this helps. Let us know how it goes.

Helpful hubby, great advice already given!  I will add that I found that my tastes changed with each AC cycle.  What sounded good on cycle 1, didn't by the next cycle for the most part.  My aversions and hard to eat days were mostly days 3-5.  I still made myself eat something at each meal and sometimes a small snack in between.  Even tho it didn't sound good, it usually made me feel better, esp if it was protein.  

She might have to try some foods that she normally wouldn't eat or eat often.  Vaniilla pudding and pear fruit cups were two things I could tolerate.  One cycle I liked chicken with artichoke and olives in a sauce (or even Italian or greek dressing), one cycle it was a 'burrito' with refried beans, chicken, taco sauce and sourcream.  One cycle I loved trail mix for snacks.  The first two cycles I enjoyed a little lemon sorbet.  Most of these things I can't look at now, but that's ok.  

And I agree with the poster that said if you need to eat a little ice cream, milkshake, frozen yogurt, etc... just do it.  Gotta get some food in for energy and strength to keep fighting!!!  

Good luck to your wife (and you...caregivers are so important!).

Hello again ladies.

First of all I want to thank all of you for taking the time to share your experiences with me. I can tell that each and every one of you are all special people just like my wife. I truly believe all cancer patients are.  I know the average person in this world doesn’t understand the courage and strength it takes to attack this stupid disease. It is possible that some of you may not even realize how proud that all of you should be of yourselves. I do, and I hope all of you can take a minute to feel good about yourself. You all deserve that!

I will get to the bottom of my wife’s dry mouth situation and hopefully have a good remedy to report back to all of you. We are unfortunately pretty experienced in the cancer department as we have helped other family members and close friends in their journeys. We both went on every appointment with my mom, her dad, my sister, her uncle, and her best friend’s husband. My wife is known as the ultimate caregiver as she truly does care about others. The point is we have seen and learned a lot, yet we are having trouble finding a good solution to her dry mouth. She understands she has to eat and does so. She just dreads eating. She doesn’t have any pain while eating. We discussed her situation with her MO and the nurses a few times. Even though he is really sharp we haven’t found the solution yet.

During her first treatment of AC she had to suck on a Popsicle to help prevent mouth sores.  The second treatment she had to change flavors, and by the third treatment she couldn’t stand the thought of a Popsicle, so she changed to plain ice chips. She used to love ice cream, but had a small taste in the middle of cycle 2, and it tasted horrible to her. The thought of diary doesn’t sound good at all at this point. I suggested maybe she should try it again just in case. The MO put her on a thrush mouthwash this week just in case. She has been able to eat pasta as it goes down pretty easily. Pasta is a double edge sword as she can eat it, but I am sure the saltiness in the sauce hasn’t helped her, but she has to eat something.

Annie, you are right about Spicy things as she gets to enjoy a few bites before the flavor disappears.

Hushkat, yes we talked to the doctor a few times trying to put our heads together to find a solution. We just haven’t had a lot of luck yet.

AMYQ, your situation sounds a lot like my wife’s except for the enjoying Diary Queen. I did suggest it might be time to try ice cream again.

Pamela, She has no pain. She did do the baking soda and the MO suggested trying it with peroxide too.  She does do omelets a few times a week.

Indenial, she shook her head yes when I showed her your post and even water tasting bad and everything tasting like garbage. I am happy yours gets back to normal.

Daffy, good points about changing after each cycle. Usually she eats something and then won’t be in the mood for it again.  Pasta is something she handles multiple times.

As far as your reaction today my guess would be it was caused by the speed of the infusion.  I don’t remember what Chemo my mom took, but she had a reaction first visit. Then after ten minutes they slowed it down and she dealt with the rest of the infusion just fine.  My wife’s uncle also had a reaction at first, and they just slowed him down and he did fine also.

Last point I want to make is my wife isn’t a complainer at all, even though I feel you all have a right to complain all you want. She is very strong and has handled this situation very well.  I can just tell this side effect frustrates her a bit and I want to find a solution.

Thanks again ladies! One day I tell you the story of her uncle’s trial and how well it is working! Immunotherapy, I think over the next decade we are going to see a lot of this for all cancers!

Chemo # 2 for me in an hour.. Still nervous.. Got my port on Monday and hubby did the buzz when i got home from the procedure and was still abit drugged up.. I did cry, but I'm over it now.. It was kind of freeing.. Got my hats, bandanas, and a very nice wig.. But I prefer to have nothing on at home.. Hair still coming out like crazy- I have bald spots- but my kids aren't phased.. And I feel comfortable..

Hopefully # 2 will be easier as far as side effects-I was down for 12 days after the first round. I'm scarred- but doing it.. My hubby and sister will be there with me..

Hope you all have a great day!!

Kerri

HelpfulHubby, sounds like you and your wife are working hard to figure this out. I know how hard it is to try and eat something that just tastes wrong. I made a batch of our favorite tortilla soup last week and found myself asking if anyone else thought it tasted awful. Then I remembered the "chemo mouth" and knew that was why.



There is a water made for people doing chemo called pure delight. http://www.prweb.com/releases/2011/4/prweb8330967.htm I haven't tried it myself, but it may be something you might consider.



Don't forget to try the plastic utensils. They did make a difference for me.



Sorry you have had so much experience with cancer in your family. I hope things improve for your wife. My challenge has been to just focus on getting through the treatment as fast as possible and just taking one day at a time.

Hello all,

Hoping that everyone is doing GREAT, will have to catch up on all these posts. I am sorry I have been MIA, in all honesty, I have been getting quite depressed and just don't want to be a damper on here so have been avoiding. The Taxol and Herceptin while with less side effects, seem to have me all over the place emotionally, or at least that is how I feel. I wish I could ditch these steroids, I think they are not good for me.

* Helpful Hubby (or anyone else dealing with mouth sores), the Dr. can prescribe something called "Magic Mouthwash" which is very helpful. It is basically a compound of Benadryl, Milk of Magnesia, and some other ingredients.

Good news, my MRI showed the AC did its job, and the tumors have significantly shrunk so far. We decide by Friday whether we will go ahead with surgery or finish the last three Taxol treatments. I am guessing he will decide to finish, but who knows. I definitely know I need to keep on here, I feel like so few people really understand fully what I (we) are going through, and I find myself feeling alone (though I know I am not) at times.

Welcome to all the newbies - and again - HAPPY THOUGHTS AND WELL WISHES TO EVERYONE!

Thought for the day:

This is a roller coaster emotionally. I don't think I understood how few people can really stand to hear the truth. I have found myself filtering for almost every one, including my husband.



Heather, I don't know if you are getting the Neulasta shot or not. I only took it once and the SE's from that were so brutal, I didn't go there again. Depression was major. Far worse than without it. Then I developed the hives -and that didn't help my disposition. Tell your doctor about how you're feeling. You aren't crazy and you don't need to do this without help. I know you're tough, but get some help.



I have finished the chemo, meeting the RO on Thursday. I had actually hoped to have a few days to enjoy before starting the Rads. I'll be driving 150 miles each day to be zapped. Looks like they'll start Monday. I know, I know. The sooner I start, the sooner I'll be finished. Happy, happy, happy.