Ixempra-My experience
Comments
-
Hello everyone,
This thread is great! I just had my first infusion of Xempra Last Monday. Tuesday and Wednesday were not bad other than being tired, but by Thursday it seemed I had pain everywhere. For some reason the Ativan seems to help. I'm afraid to take that too much though because I have liver mets. Yesterday (Saturday 6th day) I was achy and very tired. Today I feel a little better. I am also on 3,000 mg a day of Xeloda. 7 days on and 7 days off. Xempra is every 3 weeks. I just came off of Gemzar and Avistan which worked for about 3 months but was very hard on my platelets so they had to reduce the doseage of the Gemzar. Once that happened it stopped working. I pray this is the magic bullet for us all.
0 -
I forgot to add that I have IBC and am ER+PR+ Her2neg, Stage IV liver mets.
0 -
Hey Everybody!
WOW! So much has been posted since my last one. Thanks to Barb and Kateva for all the helpful info. Barb - please keep us posted on the effectiveness of the Glutamine powder. Are you rinsing your mouth out with 4 to 6 grams & in how much water? Also, how many times per day? The oncology nurse at my doc's office gave me the following recipe and it did seem to help me with the tongue:
1 TBLS baking soda, 1 tsp salt in 1 pint of warm water. She instructed me to rinse with it 4-6 times per day. I make it fresh daily in the morning in one of those pint-size plastic measuring jugs, and take it with me to work so I can rinse a couple of times there. I only needed to use it for a couple of days since I was entering into my off week on Xeloda until this Thursday. But for the couple of days I was using it, it did bring burn relief to my tongue. This Monday, I see my doc for a follow up and I am hoping she will lower the dosage which I think will help to alleviate it. This next Thursday, I go for my 3rd Ixempra infusion. I hope it continues to go pretty well as it has been. I feel so badly for those of you experiencing bodily aches and pains requiring even more meds to keep the SE's under control.
Ahhh - one side effect I do seem to be experiencing more of on this regimen is MAJOR PASSING GAS! LOL! It seems pretty uncontrollable. My hubby and I laugh about it amongst ourselves. But in public places like malls and restaurants, it can get pretty embarrassing. Any suggestions on easing volcanic eruptions from the butt?
As for the exercising, I'm with Kateva. I'm not much on the exercise routine, but I am working part-time to break up the monotony and I also enjoy romping around the house with my cat, Nikko. Once in a while, I walk around the block, but my mouth (gift of gab) and my rear end are the parts of my body getting the most exercise at the moment.
Hehehehe....That's all I have for now. Blessings to all!
0 -
I have been wondering, too, about teaching this fall . But school starts here on August 11th . Sorry to tell you that my vocabulary has permanently deleted the word "excerise". Can't find it anywhere!!!
Please let me know how the chiro/acupunture appt goes. All systems seem to be working fine just have back pain from bone mets that might help from acupunture or chiro or just a really good massage....YES!!
0 -
AH----The Gas! I thought it was just me eating too much dairy! I don't know how to control it but maybe beano? When you figure something out, please let me know.
My head is officially bald. I shaved the last of the fuzz off. Now I can more on to the next phase, hats, scarves or a wig. Such discussions!
0 -
Thanks for the updates, all.
GLUTAMINE. It's helping, I swish it (about 5 grams) and swallow. Today I mixed it in a protein shake. But this morning I woke up with a cold sore! Probably a result of my depressed immune system from the Ixempra.
JUICING. A good friend is getting me into juicing and I've agreed to go full bore for a week. I felt like I was starving the past two days and supplemented with steamed veggies and chopped up watermelon. Funny thing though, my cold sore from this morning is already way down, and I'm doing nothing else for it... maybe all those healthy enzymes from juicing. I must say though, I can't stand the wheatgrass juice. It is supposed to be one of the best and most beneficial, but I can hardly even stand to smell it. Yesterday it came right back up... and today, I could barely get any down. We are looking into other ways to get it - maybe freeze-dried in capsules or as suppositories - eeks.
ACHES AND PAINS. They are better but more noticeable it seems at night when I am trying to get to sleep. Doc's office says first week worse than weeks 2 and 3, we shall see....
GAS? I've had more too, but figured it was all the fruit I eat, which I am trying to replace with more veggies instead---in the form of juices. Also, because maybe more sugar in fruit than is good for me. Sounds like you have a nice hubby, Lifeline. One who makes you laugh instead of feel embarrassed. Yay.
EXERCISE. An clarification... I did it, but only an hour instead of 90 mins, and it was about 1/3 the strenuous level as I did up until 2 weeks ago. It felt good to go do it, but also good to not push it too hard. I believe it doing what doesn't stress you out. And if exercise doesn't come easy, then I think visualizing a jog around the track works nicely.
FATIGUE. Went to the grocery store with my sis yesterday afternoon and came home and crashed. My kids are grown, and I've been too lazy to fold the laundry even... but at least it's laid out and not getting more wrinkly. For those of you who are working, I am in awe.
0 -
Has anyone tried the mouth rinse from "the chemo shopping" thread mix for mouth sores? I think it was teapoon of liquid Benadryl with a teaspoon of Maalox?
Barb- About your ache's are you getting restless legs. I notice that really bad with certain chemos. I started taking something for it...what a big difference.
Flalady
0 -
Hello everyone,
I am on the 8th day of my Ixempra infusion and still have aches and pains. The onc took my blood counts today and they really plummeted. Especially my white count. I am now taking Neupogin shots all week and started cipro this morning. Has anyone else had trouble with their white count?
0 -
No restless legs, and slept much better the past two nights.
Woke up this morning and mouth practically back to normal and cold sore almost gone overnight.
Don't know if it's the GLUTAMINE or the JUICING, but I'm gonna keep doing both.
0 -
Hey kids - I had a kinda yucky day. My stomach has been cramping like I've eaten something too spicy. I have been in bed or on the couch all day. I also went to gloomy-town today. I can't remember who posted about depression but I've been like a cry baby all day. This is definitely not like me but it is notable. If my stomach doesn't get better by tomorrow I am going to call the doc. I am suppossed to see the chiropractor/acupunturist tomorrow- (he does both - how convenient). Maybe he can get me happy again too
! I have purposely not told anyone the life span averages since I've gone into mets. I have an 18 year old that is going to college this year and my baby is 13 - both girls. I am a single mom so I need to stay here at least 6 more years to get her graduated. That is twice the average my doc at MD Anderson gave me. I believe that God can completely heal me and that is what I am speaking and partly why I didn't tell even my closest friends - just because I didn't want the negative talk. I don't know if that makes any sense. But I am tired having this. (Yeah, I know - who isn't?) But it is good to talk to people in the same boat. I just looked up this place in Baja, California that does the whole alternative medicine deal. They claim to be able to cure cancer patients but it is a base of $28000 and they tell you to bring $5000-$20000 more for other treatments you might incur. As a teacher, I don't have that kind of cash laying around. But it does make me want to try it. But then again I need to do what Barb said and start juicing. For crying out loud I have a juicer, one of those Jack Lalaine deals. I have barely used it. Hook me up with the easy to swallow recipes, Barb. Maybe I will fell like I'm in Baja after a few drinks. Sorry to be a downer to night. I am going to go to happy-town tomorrow. Thanks for being here.0 -
Ah Kateva, you are not alone. It's a bit of a rollercoaster, isn't it. Give yourself a break, okay? You are only human and it's normal to feel the way you do - we can't be strong ALL the time.
Just a note on survival rates.... They are statistics, they are NOT YOU. I was diagnosed with mets in Feb 2002 - nearly 6-1/2 years ago. I just came back from seeing The Dark Knight, and tomorrow I am working out in the morning and playing golf in the afternoon. I think it is GREAT to have something to live for - your girls. I am the same... two kids pretty well grown, but still not completely on their own. It is what I live for, too.
Yup, dust off that juicer... I'm going to send you some recipes in a private message so everyone doesn't have to sift thru them, so check your private messages at the top of the page, okay? My juices don't taste that great, but they aren't too bad, and tons of people think they make a difference, so I'm giving it a shot. Glad I'm not alone... we can gripe (or rejoice) in how they taste!
Big hug.
0 -
NO GRAPEFRUIT JUICE. This may be of interest. My researcher had told me no grapefruit juice, which is not a big deal to me, but I was curious why. Here's what she said:
The reason grapefruit/juice is bad is that it inhibits an enzyme (CYP3A4) that helps metabolize the drug. If grapefruit juice is consumed it may result in increased plasma concentration of the drug so that the dose would have to be reduced. Another reason to avoid grapefruit is that this same enzyme (CYP3A4) is involved in metabolism of estrogen and one study found that women who consumed at least a quarter grapefruit a day were at increased risk of breast cancer compared to women who did not consume grapefruit. Grapefruit intake has also been associated with higher levels of circulating estrogen (the proposed mechanism by which it might increase breast cancer risk).
0 -
Is that for all chemo patients or just for Ixempra?
I was the one that spoke of depression. And prozac isn't helping!
0 -
I've been told no grapefruit during ANY chemotherapy regime - but I think your doctor would be a better authority than me! I did find the following article on-line that seems to reinforce what my researcher said above (this website doesn't allow posting of links):
"Grapefruit can block the activity of an enzyme in the intestine that is involved in the metabolism of certain medications. Because the medications can't be broken down, blood levels may rise and become toxic. Drugs that are affected include cholesterol lowering medications, beta-blockers for high blood pressure, some psychiatric medicines, immuno-suppressants, and protease inhibitors. The only chemotherapy drug that grapefruit is definitely known to interact with is Vincristine. However, there are concerns about the interaction of grapefruit with other chemotherapy drugs based on our knowledge of the way they function. If you regularly eat grapefruit or drink grapefruit juice, ask your doctor or pharmacist about possible medication and chemotherapy drug interactions. Other citrus foods and juices, such as orange juice, do not appear to interfere with medication metabolism."
0 -
It has been 2 weeks since my last infusion and this is the best week so far!! Is there hope?
0 -
Hey kids - I am back from the acupuncturist. I have had 2 treatments so far and I have noticed an increase in energy - YEAH! Today he switched me around for some nasea treatment. I have had some tummy troubles the past few days. Tonight I ate better than I have in weeks. It even tasted...okay - not great but okay. Taste buds are still pretty flat. I have started losing weight which I have plenty to loose before I blow away. I am a pretty big girl but it is 18lbs in about 3 weeks. I think this is mostly due to my loss of appetite. But the chiropractor/acupuncturist told me that he thought that the acupuncture would work best and we would just try and see. He said after 4 treatments we would know whether it was worth it or not. I did one on Tuesday and one Today and I have seen a difference already. My next 2 are scheduled for next week which should be my best week anyway b/c it is my 3rd week and I get to lay off of the Xeloda on the 3rd week. He said that my kidneys were at the lowest energy levels and that he would try and stimulate this area first. He also said that it was not out of the realm of hoping that stimulating the kidneys might help with the fluid on my lung. So hope springs eternal. I am still coughing but hoping that it is just a matter of needles. Oh by the way - it did not hurt one bit - and yes I am a big baby with no pain tolerance so don't even think that it hurt. Getting blood drawn is tons more painful. I did not even feel them going in. My mood has been better today too. Thanks for all the love. Even we super heroes get down sometimes ! 0
-
Thank you for sharing your experience. You have given me the confidence to explore acupuncture. How did he know about your kidney activity? Does he do an assessment prior to treatment?
0 -
Hey Lori,
Yes, he did a little screening thing. I held a metal tube and he ran a white probe looking instrument along my hands and feet. He said he was measuring energy in my meridians. This is some type of eastern deal. He showed me my print out and said most people score up in the 100's - I was in the teens. This apparently was energy amounts. I know I am not explaining it well, but the proof so far has been in my increased energy and less nasea. Yeah! My kidneys showed the lowest marks so that is where he decided to concentrate my first treatments. He also said that it was not outside of the perimeters that if my kidneys increased functioning that maybe fluid off of my lungs would dissapate. First words of hope some one with an MD before his name have spoken to me. So Yee Haw! Let me know how yours goes.
0 -
Hi Everybody!
Just caught up on the most recent posts.
Barb - yes, my husband is a gem! Our faith in God is our foundation, our rock in fighting this battle and we do, indeed, fight it TOGETHER! Laughter is definitely sweet for the soul and soothing to the bones.
My onc also warned me to avoid the grapefruit juice before starting the Ixempra. We've never had that discussion prior to this regimen. It's interesting to hear that it may interfere with other chemo drugs as well.
As for the mouth rinse, the recipe my onc gave me with the baking soda and salt seems to be doing the trick for now, so I think I will stick with that for the time being. She also reduced my Xeloda dosage from 4000 mg per day to 3500 to see if that helps alleviate the mouth issues while maintaining the maximum benefit of the drug to fight the cancer.
For Kateva, I also try not to weigh too heavily on stats. I agree with Barb's encouraging words to you. Please allow me to take it a step further. I focus on the fact that God made me a unique individual, that He ordained the days for me here long before I was ever a glint in my parents' eyes. I know He has allowed this affliction in my life as an avenue of being able to offer encouragement and comfort to others that I would not have crossed paths with otherwise, such as all of you lovely ladies who are my compadres in this battle. He has taught me that there are certain very special gems of blessing that can only be revealed in the midst of a fiery trial. My hubby and I can definitely attest to that! Without our spiritual focus, we both would be floundering and wallowing in sadness and depression. It is only because we look to our precious Lord for His strength and tender loving arms to envelop us that we are able to forge ahead in this journey.
Now having said that, I received my third treatment of the Ixempra on Thursday and started my second round of Xeloda. I just discovered on Thursday morning before the treatment began that my CA2729 TM spiked another 300 points since the previous reading a month before. Did I feel the discouragement? Of course! First thing I did was call the doc from the infusion center and asked if she still wanted to pursue this treatment, or go to the next one in line. I was advised not to panic - to go ahead with this next cycle of Ixempra and give it a little more time to see if the cancer responds. So I did as instructed & surrendered the circumstances of my body back to God. Yes, I feel those human pangs of initial fear and trepidation, but when I put my focus back on the bigger picture of what God can still do through me in the midst of all of it, my heart feels His peace which really does surpass all human understanding.
I don't mean to sound preachy in any way - just sharing what helps me get through it. And I hope that what I've shared does bless one or some of you in some small way that helps you to better cope.
Please know that my prayers are with all of you - that you would sense God initmately drawing close to your hearts to comfort and encourage you in ways only He can do, especially on the most difficult days.
On that note, I will close and wish you all a wonderful rest of your weekend.
Blessings to all!
0 -
I forgot to mention that I was able to get a little excercise yesterday. The weather was so beautiful (I live in eastern PA) - low humidity - low 80's. So I went for what I thought would be a casual walk around the block with a friend from church who suffers with acute fibromyalgia. We got into such good discussion that we ended up walking for a good 2 miles. It felt really good just to be out enjoying good companionship on a lovely day walking around the neighborhood. I told her I'd like to do that more frequently when the weather is so nice and she was very receptive. Walking also helps her manage her illness better. I don't expect to make it a routine, but a once in a while type of thing based on spontaneity. In other words, when it feels right, I'll just go for it...LOL!
0 -
Hey Kat
thanks for the info about acupuncturist...have been thinking about going myself.
Saw onc on Thu before my infusion. Told me mets have progressed to my spine. It is weird because about a month ago I told both him and a friend of mine that I thought it was now in my back. I did not have pain but when I was doing pilates, things felt different when I did certain moves. So anyway now they have added zometa to my infusions. Had 5th infusion of ixempra (now with zometa) on Thursday. Yesterday I felt horrible. Had chills real bad (from zometa) and felt like I could barely move. But today I feel pretty darn good. Better than with my other infusions. My feet are getting number by the day and they blister SOO easily but other than that let's see what tomorrow brings!
hope everyone else is doing well!
0 -
I was told that it is not unusual for your tumor markers to spike up during early infusions before seeing results.
I am happy to report that my tumor markers are going down!!!!
0 -
Lifeline,
Sorry about the counts going up, but my Doc too, has told me that counts can spike at the beginning of a treatment, because the dying cancer cells release something (maybe themselves?!) into the blood stream that results in false higher counts. This has actually happened to me in the past, where it looked like it wasn't working, but it WAS.
So, I am crossing my fingers, toes, legs, and eyes that your higher count is one of those false count increases which could actually mean the Ixempra is working.
Keep the faith,
Barb
0 -
Lori & Barb,
Thanks so much for encouraging me regarding the higher TM counts. It helps to maintain a balanced perspective and refrain from bumming. Lori, I am so happy for you that your TM counts are decreasing. That's great news! WAY TO GO!!!! Hope you see continued success.
Today, no major issues so far - my mouth is doing ok for the time being. I think after Thursday of this next week will be the true test with the Xeloda side-effects since I will be into the second week of the cycle and that's when side-effects started showing up on the last cycle.
0 -
Today I tried to do too many activities and I landed in bed for a few hours! How depressing! I hate this disease! Twice today I was asked how long will be your treatments and I answered my "new" blanket statement I copied off this forum..."Until they find a cure, I will be on chemo". It is even more depressing to think about that!
Like Scarlett O'Hara......tomorrow is another day!
0 -
Well, my next step is to find someplace that can or at least says they think they can cure me. I have no idea how I will pay for this since these places usually want money up front and insurance doesn't work or at least for most of it. God will again have to be big enough to provide. I know that He is. I am interested in seeing what you guys have heard about such places. Don't worry I'm not kicking MD Anderson to the curb. I will be on my 4 infusion a week from tomorrow. Some of the places that I have looked at are Envito which is in Scottsdale, Arizona, Issels in San Diego, Sanivov in Baja, California and a place in Reno. Most of these clinics have had success stories with stage IV cancer patients. They seem to work on building up your immune system instead of tearing it down - what a concept - huh? There is definitely the push on nutrition but also alot of IV stuff like Vitamen C injections and Insulin and blood stuff. As you can see I am way knowledgable haha. But hey if someone can cure us wouldn't that be great?! Then we could all meet in Baja and soak up the sun, drink horrible vegetable juice conncotions and compare war stories. Sounds like heaven girls. Get back to me. Thanks for the encouragement lifeline. I know God is good.
0 -
MD Anderson is very aggressive with their treatment ideas. If you are as aggressive as they are, that's the place for you! I use them as my consultation doctors but I am not willing to try clinicial ttrials. I want the proven stuff!
All in all, I value their opinions!
0 -
Kateva,
I say kick MDA to the curb. If they are not being anymore proactive in telling you what the next step is...you can be treated closer to home. MDA does not offer anything more than most clinic's if you are not willing to do Phase I or II trials. And a lot of these are a joke. Please... they are still playing games with Avastin in Phase II/III trials I got it 3 years ago outside of trial. I know been there and done that. Do you have good insurance? Do look around for other clinic's who have success with lung mets. Look at Duke Univ in NC. Michigan Univ is doing good work. Sometime bigger is not better. The concern is to complete their current trials and are slow to work with new drugs. I don't know your history so I'm not sure what chemo's you have used I just meet a lady that had a lung meet that is now gone with Avastin and Gemzar.
You might want to join us on the Alternative & Comp section. Don't give up there are other options. Follow your heart and some point more and more chemo does not make senses. Educate yourself and start making phone calls. Cost and travel can become a problem. This will help you eliminate what you can and can't do, Then you may have some peace with what options are left.
Flalady
Flalady
0 -
I am having a real hard time on Ixempra. I can't shake the overwhelming fatique issue. I have been at work for a total of 8 hrs. in the week after . my first infusion. Even tho I am so tired....I can't sleep when I do lay down. I think I am getting depressed, just what I need. My next infusion is 8/8/08...and I am dreading it for the SE. Is there anything I can do or take to correct. I do have some bone pain but not bad. Any suggestions, sisters?
Chris
0 -
Hi Chris,
I''m no expert, because I've only had one infusion so far-- exactly two weeks ago. I was pretty dehydrated, my stomach felt weird, and I was very tired the first two days. I've always done really well on other chemos, and began to believe that if it didn't get better, I wouldn't be able to do this one...
For me, it did get better. I drank tons of water, took Motrin for some of the aches, and a friend got me going on juicing, lots of it. I also took Glutamine, because my gums were tender and bleeding, and the Glutamine fixed that immediately. By Saturday, 5 days after the infusion, I was feeling pretty normal again.
I don't know if it was the juicing, but I'm thinking maybe all those nutrients made me stronger, even if they weren't all that tasty.
I was getting depressed also. That happens to me every time I have a relapse. I've worked so hard to get stronger and fitter, and I actually start believing I might be able to beat this thing... and then WHAM! It's back again. When I'm feeling that way, all I want to do is eat, and not always the stuff that is best for me.
I've heard that this drug is supposed to be really promising, so I am hoping it works for all of us. If you have anyone that will juice for you, maybe you could give that a try...
Good luck, and I hope some of the others have some better ideas.
0
