Ixempra-My experience
Comments
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I'm on Ixempra (with Xeloda) for my skin mets, too. I can't see improvement yet, but I just started 5 wks ago & the literature I've read on it says it's more like 11 wks to response.... not that I'm not looking every day to see a difference, though!
Vicki
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Hi Gals!
I've been on quite an emotional roller-coaster ride with me moving on to LTD from STD. I've had days where it has taken every ounce of my strength just to hold it together. So sorry it has taken me a while to get back to this discussion. Just caught up on the latest posts.
LoriFL - thanks for all your feedback. GREAT NEWS ABOUT YOU!!!! THAT'S AWESOME!!! I am very excited for you! In answer to your question, I live in Pennsylvania. My last day on STD is Sept. 9th. Then I must go on to LTD. At that point, my employer is able to release me from the payroll and refer me over to Cobra to maintain my benefits. I've been doing a LOT of research. I spoke in depth with a rep from Mutual of Omaha. Here's how it works....I will start by collecting LTD that equals two thirds of my salary. Once I begin receiving SSI, both LTD and SSI payouts will still only equal two thirds of my salary. SSI allows you to work part-time up to a gross income of $940.00 per month. BUT LTD deducts any additional income from their payment. MY GOODNESS!!! These agencies make it really hard on you just to survive!!! GRRRRRRRRrrrrrrrrrrrrrrrrrr....
SOOOOOooooo, my best case scenario is to seek part-time emplyment that offers benefits with a salary that will not exceed the $940.00 ceiling imposed by SSI. I need to be able to find benefits to cover both me and my hubby. He has a good job in a small family owned business, but the benefits package they offer is a LOUSY plan - just very bare bones with a very high deductible. For the time being he will hop on that plan as a single, and I will do Cobra as a single. If I can pick up the right part-time position that will offer us benefits, then that will be a MAJOR blessing for us. So please keep us in your prayers on that note. LoriFL, I will follow your advice and review the discussion thread on STD & LTD elsewhere on the site. I apologize to everyone else for sharing the details of this matter on this thread. So going forward, I will continue posting about this on the other discussion thread.
Now - on to the latest clinical update. This next Thursday, I receive my 5th Ixempra regimen. This last Thursday, I did a CT scan to measure its effectiveness. In addition, I did a bone scan because I haven't had one ordered for me in several years. So we just want to be sure it hasn't spread to the bone. I also did my bloodwork, which includes the latest CA2729 reading. I have no results yet, but I see my oncologist on Wednesday. So I'm sure I'll have more news to share then. I remain encouraged and hopeful that my TMs continue to decline and the CT scan is reflective of this as well.
With the exception of some minor mouth issues I'm still dealing with, but not as pronounced, I'm really not experiencing the more severe side effects some of you other ladies are enduring. Please know my heart goes out to you and that you and your docs will find effective ways to alleviate your side effects.
It's so important to remember that you are each very unique individuals. That's how God designed us. NO one's body chemistry is exactly the same. Therefore, we each must be very proactive with our doctors to find just the right balance of medications and complementary alternatives to attain the best quality of life, yet effectively continue keeping the cancer at bay. But no matter what - remember that God is walking WITH you & me in this journey and He will NEVER forsake us. It's a promise you can count on....
I hope this will serve to encourage someone. May God bless you all with better health and less severity in side effects.
I appreciate you!
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Hi gang,
Hope all the ixempra gals are doing well! Just had my 6th infusion last week and just got my tumor mark results back (CA 15-3) and THEY ARE IN THE NORMAL RANGE!!!! I am so excited about this...almost in disbelief. They are now 36 and just a few months ago rose to 155, but that was before Ixempra. So glad this nasty chemo seems to be working. I have one more infusion to go. My SEs are more manageable now. Still have some pain and restless leg syndrome. Sleeping has improved. Still nauseous a lot though so my diet is pretty bland. My eyes are really taking a hit now too and my vision has def changed. And I have major neuropathy in my feet.
I am excited that I will be done with chemo by end of Sept. Hang in there everyone!!
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Hi everyone,
I just finised reading all 8 pages. i have learned so much!!! thanks again for sharing. i get #2 next wed 9/17. now i have a few ideas to help with the SEs.
kateve--i'm excited for you going to CTCA. they are a place i will want to try when necessary.
Lots of love to ya all--cathy
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Too Young,
That's AWESOME!!! I am VERY HAPPY for you! Keep persevering, girlfriend!
I also have some good news...My TMs are down to 874 from a high of 1548. Latest CT scan from 8/28 shows some improvement in liver and lung areas. Also did a bone scan for an update since it's been several years since my last one. That showed no evidence of any metastasis.
My last day of work was Tuesday. It was a sad day for everyone. No one wanted to see me go. That made me feel good. They threw me a nice lunch and gave me a beautiful bouquet of roses. I waited until later to read the cards and I discovered that they also gave me a cash gift. I was flabbergasted to see the cash in the card.
I'm glad I didn't open them until after it was over. My emotions would've gotten the best of me and it would have been so hard to finish out the day. I'm really gonna miss them. 
SOOOOOOooooooooo, hope the rest of you are doing well and getting a little better each day. Know that my prayers continue to be with you. Have a great weekend ahead!
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Seems as if Ixempra is working for all of us!!!!
Hate to be Debbie Downer but how long will it keep our cancer at bay?
Will our number keep gettting lower?0 -
Hope all are well!
so my feet are getting number by the day. Anyone else enjoying this SE? They are numb but if i go for long walk, they hurt. Feel numb yet arthritic. I think I only have one more dose left. Cannot wait to be done!!!
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My finger tips are all numb!
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I've tried a natural remedy for Hand-Foot Syndrome that actually worked. I'm very skeptical about alternative therapies but I was so desperate and this was from an article in the International Herald Tribune, which I consider to be fairly reputable, so I gave it a try. Here's a Web site about it: http://xelodasideeffects.blogspot.com/
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Thank you... I will!
I now get Nuelasta shots 24 hours after my Ixempra for my white blood counts. Just one more thing to my "cocktail"!
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Henna???? How interesting!
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Hi Ladies,
I am doing some research on Ixempra. My wife is supposed to start on it in 2 weeks time. there does not appear to be too much info on it, besides the drug company web site. Are there any sites with statistics of how the drug is performing?
I admire all you ladies courage and spirits.
Thank you for any help you can give me.
Frank
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Hi there TXhubby
I was not able to find much info on the web about ixempra unfortunately. This chemo was a tough one for me so I would suggest your wife ask for some pain meds and work with her doc on dosage if it is too much for her.
Ixempra gals...Good news is that it worked well for me in shrinking the tumors. Doc said my pet scan showed some residual cells in liver and nodes under arm but they appear to be inactive so will continue to take tykerb to keep them in check and then also am doing zometa to help some areas in my bones that appear affected by the chemo. So I am not officially NED, but did get to stop this chemo which was great. Now time to grow some hair!
Hope everyone else is doing well.
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I finally had to bite the bullet and start on Ixempra. I really fought taking this drug because of my Level III neuropathy. My nflammatory bc is is spreading rapidly and we (doctor & I) feel like we most take a chance and use this drug but in low doses. Has anyone been treated as a once a week dose for three weeks and than one off? Side effects manageable? I will also have it with Avastin.
Flalady
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FloridaLady, sorry I don't have any information for you. I have been worried about you lately, not having seen your posts. I am glad you are back. I like your courage, it sounds like you need to take a leap of faith and go for it. Some women have knocked the pants off the cancer with this drug. Keep us informed. PM me if you need a shoulder. Maryiz
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I have been on Ixempra since April 2008.
Once you get on a comfortable dosage, you will be able to function almost normally. Wait, i forgot, what is normal for BC ladies????
Ixempra can knock the socks off you. I had a dosage reduction and it has made a huge difference. But be prepared for major fatigue! Some get nueropathy, some have stomach problems, and most have hair lose.
Avastin comes with high blood pressure and easily bruising abd bleeding.
Can you do this? YES, you can!!! It just takes some adjustments but it is all doable!
You will be in my thoughts! {{{hugs}}}
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FloridaLady,
I'm glad your oncologist has that "dose dense" trick up his sleeves. I'm crossing fingers really really hard that this combo does the job with tolerable side effects. Did you start the first dose already? Please keep us updated on your progress.
Wish you the very best.
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Thanks Pinehouse,
I had the first one last week. My hands/feet already feel bad but so far that is my only side effect.
I have not seen you in a while...How are you doing? Did you decide on treatment?
Flalady
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Fla,
Sorry I didn't see VickiG's post on the TN side. I will PM you.
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Fla,
Cam just got her results from PET/CT..No apparent Breast Cancer, no lymphatic activities. No lite ups anywhere. So Ixempra works, the fatigue nausea and pain was at the point of no mas.
Am glad the Onc stayed with it. The problem now is no surgury. After you warned of radiation, that{a multiplied version) seems to be the only local treatment she can get. Her skin involement was so great, including up to neck, over top of shoulder, under arm around to back, and both breast, he feels surgury would leave too much potential for recurrance. So whole chest radiation and try not to affect heart, esophagist, lungs and such. I hope you understand this post with my spelling. I hope Ixempra gives you the same results.
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I just read your post about the rash on your hand. I also have a rash on one of my hands. Not sure if it's the Ixempra or Xeloda. What did you do for it?
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ibcspouse,
Thank you so much for your positive post. I soooo needed it right now. And tell Cam CONGRATULATION on a good PET scan. I hope you guys celebrated. How long was she on Ixempra? My doc also spoke of radiation possible down the line also. Let me know how Cam does with this treatment. Has she already have both sides done with rads? Are they going to try and cover the entire area of skins mets? I'm worried that my skin broke open with my first rads...now after skin mets what will it do?
bks,
With Xeloda you can get hands and feet side effects. Put on very regularly good thick lotion like Udderly Smooth. You need to do hands and feet and do not use a lot of hot water or chemicals around your h/f.
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I had 3rd Ixempra today. Note...I'm doing low dose weekly. So far have the lovely swollen stomach back...Yuck! I have a little indigestion. My neuropathy is only a little worse so far. And I don't think I'm going to loose my HAIR
Now I'm just waiting on my GREAT response with this new chemo. Flalady
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Flalady ~ hoping for a great response for you!!!!!!!!! Hope you are feeling ok w/ this tx.
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FloridaLady, Sounds like you are doing great, praying for a great response. Keep us posted, Maryiz
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I am waiting for your great responses too! Good luck with it!!
try nexium for the stomach problems.
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Flalady, and all
I know I have seen some discussion of the site before ablout Miltex. Have you ever tried it for skin mets. I know it is not available in USA except in overseas order. I am cut and pasting some infor, so I am sorry for the length.
The Moffitt Cancer Center in Florida also has a Miltex trial:
http://surgery.medscape.com/moffitt/CancerControl/1997/v04.n03s/cc0403s.07/cc0403s.07.html
While not for IBC, I noticed Cornell University at New York
is conducting fundamental research on Miltex:http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=0010669380&form=6&db=m&dopt=r
The comprehensive German trial with 443 patients showed:
Overall response rate was 27% (intent-to-treat analysis)
and depth of infiltration was identified as the most
relevant prognostic factor to response of skin lesions.
Patients having flat nodular lesions (infiltration up to 1 cm)
and/or lymphangitic infiltration without deep subcutaneous
tumor mass achieved a response rate (CR and PR) of
approximately 40%. In case MiltexÒ was added on top
of an endocrine therapy which had failed to control the skin
lesions, a response rate of again 40% was observed.
The median time to progression of skin lesions was 27 weeks.Conclusion: MiltexÒ appears to be a safe and effective
palliative treatment for patients with cutaneous metastases
of breast cancer and their relapse. It can be used alone
or in combination with necessary systemic therapy to
control the skin metastases and to postpone, when possible,
systemic therapy until evidence of global disease
progression. It is feasible for self-administration as a
palliative treatment in order to improve the well being and
the quality of life of the patients.http://www.asco.org/prof/me/html/abstracts/bc/m_525.htm
I noticed an ASCO post of an Egyptian clinical trial at:
http://ascobeta.infostreet.com/prof/me/html/abstracts/bc/m_591.htm
A France trial of Miltex or MIL) involving 18 females and
6 males being treated for melanoma (I've always wondered
about the association and am including this URL since it
describes dosages):http://oncolink.org/cancernet/97/june/706570.html
A 1999 Argentina study is discussed at:
http://www.asco.org/prof/me/html/99abstracts/bc/m_390.htm
a 1999 United Kingdom study is available at:
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Hello Ladies,
I can't thank you enough for your posts. I'm in the throes of riding out the SE from dose #2 of Ixempra. The first dose went really well--my calendar shows that I only had troublesome SE for three days, then I leveled out. I did lose all my hair (and I had a ton of it to lose) in week three. This go-round, I have settled into a nasty week of SE--pain, nausea, constipation, diaper rash, sore mouth, extreme fatigue--can't stand for more than about 30 seconds without black spots before my eyes and a roaring in my ears which I recognize as signs that I'm about to pass out.
I live in a remote bush village in Alaska--50 hearty souls. Everyone is so kind, but I lacked (until I found you ladies) a sounding board and support group. You are so right, tooyoungtohavebc, there is little on the Internet about Ixempra--thanks for starting this topic. Now I know that what I'm experiencing can be attributed to Ixempra. By the way, I am not taking Xeloda or anything beyond Zometa with this. I just came off Xeloda (which I could take in pill form here in the village)--it didn't work--I admire you troopers who are taking both--Yikes! I now travel to Anchorage every three weeks for tx. Expensive proposition, $500 round trip. But, I want to keep living here with my principal/teacher husband of 42 years.
I finally had to stop working (that was hard) and just got STD from my employer and am in my waiting period for SSDI. We are officially retiring in May and moving to a small community on the road system. It will make receiving tx and seeing my onc much easier. I've been stubborn and unwilling to can my bush lifestyle until I'm ready--my doctor has gotten a tad frustrated with me. That's her problem.
The one good thing about dealing with fatigue is that I do very little and the lymphedema in my right arm improves! I'll take any and all positive tradeoffs. I don't have all my diagnosis info or tx history handy & my head won't produce many helpful facts right now, but my last scan showed bone mets from skull to pelvis, a node or two behind my breast bone light up in my CT, and a cloudy place in one of my lungs (cancer?).
For all you Moms who are warrioring through this for your kids, once you have grandkids, you'll keep warrioring for them. I've got to hang around to see what they do with their lives--they are unique people & so much fun. Guess we just keep on keeping on.
Again, thanks so much.
Carole
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Hello Everyone!
I know, I know...long time, no speak. Just a lot of stuff going on in my personal life. Still looking for a part-time job with benefits. Finances are very tight, but we're holding our own so far. Also was approved for SSDI and received my first check last month. So that's a bit of a relief.
Tomorrow - I go for my 8th treatment of Ixempra. My TM count continues to decline - now down to 577 as of 3 weeks ago. Still waiting on the reading from the bloodwork I did last week. I'm now down to 3000 mg of Xeloda 2 weeks on 1 week off. I am experiencing extreme dryness on both my hands and feet. Also slight neuropathy on the bottom of my 2nd, 3rd & 4th toes in both feet, but still plugging along.
Hope everyone else is hanging in there and staying the course....my prayers continue to be with you all. Be well!
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Carole,
What a warrior...in more ways than one. I can't imagine the logistics you must have just to get treatment. Hang in there and hopefully Ixempra with kick cancer's butt for you.
Flalady
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