Hey, thanks for the comments and suggestions. Mom went back to the oncologist today and he took her off Doxil because of her extreme reaction after two treatments. Her hands and feet are really swollen and it will take 4 - 6 weeks for the swelling to go down. Nice. Anyway, she's starting on Avastin next week. We're running out of tools in the toolbox...but there still are a few. I'm going to post a new question about Avastin.
Denyc
Hello girl>
I'm sorry your mom is having a hard time with the doxil. I'm not trying to butt in here but the l-glutamine is a very common supplement that can be found in any health store or even in the vitamin section in your local grocery store. I recommend the powder form but they also have it in pill form. I mix it in with a smoothy for breakfast. I don't know about it helping with mouth sores but do know it is recommended for neuropathy for hands and feet.
Good luck and let us know how your mom is doing. I am thinking of her daily.
Teresa/doicat
sorry. it posted before I was finished. My question about the L-Glutamine...where do I get this?
Also the swelling, any recommendations?
Thank you all so much for being so transparent and willing to share your ups and downs. You help us all so much.
Denyc
Teresa,
I'm with Alisa. Thank you so much. My mom has had two rounds of Doxil so far and just the last two weeks has had the mouth sores, but has also been really exhausted. Today she went in to the clinic to get fluids for dehydration and hopefully will help her extreme swelling of her feet and hands. She can barely get her shoes on and tonight couldn't hold a pen to finish her bible study. To say she is down, depressed, and struggling is an understatement. She has been really emotional and totally overreacting to situations. This upsets her far more than us. I wish she would understand that none of us expect her to power through this. She is not used to being the "needy" one and it is hard for her to ask for help.
What was the mouthwash recommended?
Congratulations for your complex presentations.
I believe You must have a higher intake of liquids and to know the liquids intake and the urine volume daily.The problems you presented indicate that you made a hypovolemy (blood volume down), that s why you had hypotension. And after infusion blood tension was higher.You can avoid this by liquids...
Did you try any suplements.
What do you know about BIoBran???
Ainegeu
You don't know how happy that makes me to know it was some help to you and your mother! Thank you for sharing that with us/me. Tell her it's not all bad and that hopefully it will kill the beast for her.
Although I've had problems with Doxil...I doubt there are many toxic chemo's out there that all of us don't experience some side effects that are uncomfortable. All in all, it is a tolerable situation.
Someone asked about my CA125. It's 17 right now and I began at 9. However, the lab the hospital was using has changed midstream. I am still within their "normal" number. It tops out at 35.
Teresa
Girl, got your PM and note on my puppy. No, I missed this post somehow. I've been on a few times this week but somehow missed your post.
I've just finished my 3rd treatment of Doxil and the trial drug EC145. So far no mouth sores but have had the red peeling hands (feet just red no peeling). I attribute them not getting soo be because of the ice gel packs during treatment and several times a day afterwards for about a week or so and the udderly Smooth cream and lotion. I also found after this last treatment the red pin pricks all over my thighs and torso. They really look like little pin pricks! I've put lotion on them and they seem much better. Finally, I have been having more severe neuropathy in hands and feet than with the taxol but i attribute this to doxil AND the trial drug, since I take the trial drug more often, I don't really recover.
So far, been okay with WBC though it dips a lot during week 3.
Teresa thanks for this post!
Teresa2
PS: I'll PM you tonight about other more important stuff (i.e. my Puppy!) LOL!
Oh my gosh Teresa...thank you, thank you and THANK YOU!!!!!! You have no idea how it felt to literally hang up the phone with my Mom (while she was still sitting at her Dr. App.) jump on the computer to MH in order to find someone who had been experiencing Doxil...amazing!!!! My Mom's Dr. TODAY has just changed her chemo to Doxil. Just a few moments on the site and there you were...WOW! Thank you all for your imputs and the time you take to share. Whether the info is "good feeling" info or not it is still so comforting to walk beside someone through this journey. Thank you Ladies'
Alisa
Yes, I used the icepacks on my hands and feet for each treatment. I think that is the reason I'm not having as big a problem with my hands and feet that some women do.
Surviver Susie: Where do you get the G-Glutimine? Is it over the counter?
Thank you for sharing this very valuable information, especially given the way you've been feeling. Like Jane, I hope that the Doxil is doing it's job, not just giving you fits. I will start a thread like this to inform folks about how Topo is affecting me.
Wishing you better days ahead,
Sharon
Do you tie the ice packs that come in the Doxil kit around your wrists and ankles when you have treatments? I forgot to ask that part the other day. If not, maybe you could try that next time. I used them for all my Doxil treatments, but I didn't have that many treatments, so I can't say 100% if they helped or not, but they couldn't hurt. If you didn't get the Doxil pack, it comes with a tube of Udder Cream. I'm sure you have your lotion of choice, but if you haven't tried it, it is pretty good stuff. Oh, and the mouthwash I was talking about the other day is called Prevention Oncology Mouthwash. You can get it at any drugstore or Walmart.
I'm really sorry you had so much trouble this vveekend. I hope you're back on your way to feeling better.
Gail
I am glad you updated us. I agree that we need to post about treatments to help others. Thanks for the reminder that posting treaments is how we can help each other.
Arlynn
Any chance the chemo nurses forgot benedryl or something in the mix? You seemed to be doing so well up to this last round.
Hang in there .. we are all with you in spirit.
Judy
I am sorry you are having the side effects. I agree that we all should do regular up-dating posts like this. There is no way to guess how many will read this and be helped by your shared information. I have had a rocky time on my last cycle, which is why I have been absent. I will update on myself when I can get my head working a little better. Marie.
Hi Teresa, you're having such a hard time with the Doxil, I feel so bad for you reading your post. You didn't mention if you've had a Ca125, or scans while your on Doxil, is it helping with the disease? I really hope that considering the side affects you're dealing with that it's kicking butt!
I absolutely agree with you about our posting about our chemo treatments, and side affects. The more information we have, the better equipped we are to make informed choices, and know what to possibly expect.
I think I had read something about cool showers, and sucking on ice pops, or ice chips.
I hope you get some relief, it's hard to see how tough it is for you.
Take care of yourself,
Jane
I'm so sorry that you're having reactions at this point. I do have a suggestion. I got mouth sores from treatment one on carbo/taxol. I made a mouthwash out of L-Glutamine, as recommended by a nurse online. Wow. No more mouth sores.
Best of luck,
Survivor Susie
Well done, Teresa. Did the MD have any explanation on why you reacted so much after round 5? I dread the day I will try Doxil.
Had 5 days of topotecan last week .. now have 2 weeks off. Exhaustion is about my only side effect. Had Neulasta shot today for my white count.
Some ladies here get topo once a week for 3 weeks with the 4th week off.
Judy