lapatinib updates

[lindaw]

Dear All
I always find that what we seem to discover from others expereince is helpful.
i was wondering if those on lapatinib/xeloda could offer there updates.

i have been on for approximately 8 weeks.At first i had a rapid clearing of skin mets . latley it seems to have slowed. i don't think i have any new ones but the clearing is slower. I have developed the hanf/foot thing and feet are sore today but I htink that is because the shower was too hot this moring.
Wounds on my chest are better but still a problem - not mets any more but wounds that won't heal. i have been to 2 wound care nurses and have been dressing them for about 1 and a half years.Not sure what to do next have considered consulting a dermatologist.

Hope others are well. I have not been on list for ages as have been away.

love
Lindaw

[Lolly]

Dear Linda, It's good to "see" you. I'm glad you continue to do well, but the slow healing is a drag...Have you heard any thing about Hyperbaric Oxygen Therapy? It's not widespread, but some doctors are exploring it for stubborn problem wounds.
Here's a link to a loooong article explaining the history and current uses...

Hyperbaric Oxygen Therapy
http://www.emedicine.com/plastic/topic526.htm

<3 Lolly

[lindaw]

Dear lolly

thanks for reply- i will look into it. I ahve to take my son to the dermatologist tomorrow - in Melbourne( 3 hours away). We are getting a dermo here in March. I was thinking of asking him if he new of anything.Hope you are doing well.

love
linda

[Lolly]

Dear Linda,

I'm doing ok, at least for now! Thanks for asking. Hope your trip is safe, and HOPE the dermo has some suggestions for you. Keep us posted, ok?!

<3 Lolly

[Sandy H]

Hi Linda: I think that is good just in 8 weeks!! I got a rapid response and then it slowed and now all gone. Its been since the end of August. I did not have and have never had any open areas. I am sure the more you have the longer it will take. Mine appeared to be surface only and looked like a skin rash which was itchy and burning. I had a small area around the port leading from the mastectomy scar on the opposite side of IBC. Hang in there I think it will continue to get better. Tykerb should be released next month and perhaps, your oncologist can add a different combo at that time. My hands and feet seem to be fine. It took me a while to figure out how to keep them healthy and what cream worked for me. My hands are numb and I don't have much strenght to open things. I can button my clothes. Thanks for the update. hugs, Sandy

[heblaj01]

Lindaw,
Your idea of consulting a dermatologist is the thing to do.
I remember reading about two uncommon treatments for hard to heal wounds.
A few MD in the US use sugar for deep wounds such as bed sores. Besides being slighly antiseptic, sugar easily absorbs wound secretions, can be applied even in recessed areas & can be washed away without leaving residue or causing tearing.
The other treatment uses a honey based medication currently used for cancer patients in German hospitals. Honey's antibacterial & antifungal properties have been extensively studied in New Zeland using local selected varieties.
I recently talked to an experienced infection specialist in a hospital who successfully treated severe abdominal wounds using this medication.

http://www.eurekalert.org/pub_releases/2006-07/uob-hhp072706.php (http://www.eurekalert.org/pub_releases/2006-07/uob-hhp072706.php)

http://www.medihoney.com/

[lindaw]

Dear All

Thanks for suggestions and help. I have some medihoney cream which I may try .I really do appreciate your messages. I have been neglectful in psoting lately. The passing of friends on the list got to me and have been very sad. i will try and be more active on the list.

love
linda

[Lolly]

Dear Linda,

Yes, losing our friends has been hard on me too, and I just started posting again recently too.
<3 Lolly

[heblaj01]

Lindaw,
I forgot to mention one point in my previous post. This is based on a case that happened a few months ago.
Visual inspection of skin by an GP & an infection specialist was declared to be a fungus infection (perhaps caused by side effects of chemo). However a topical & then a systemic antifungus treatment failed to clear the symptoms. A swab specimen of skin was sent by the specialist to the lab for testing for bacterial infection:ithe results came back as positive & the infection was successfully treated in 7 days with an oral antibiotic. The comments from the Drs were that the fungus infection created small cracks in the skins which eased the pentration of bacteria.
The lesson from this might be that when a skin condition does not clear quickly, a lab culture may provide the exact diagnostic in a short time (3days). This may save someone from having to take unnecessary oral antifungal drugs whose side effects are usually worse than those of antibiotics.<!-- / message -->

[Sandy H]

That is interesting, the bacteria, but makes sense to me. I would be careful about putting some of those agents on an open lesion. I know colostrum is a great healing agent and good for the immine system as well. We have to do what we have to do and go with our gut feeling sometimes. I hope you find something that works it doesn't matter what it is as long as it works for this disease. hugs, Sandy

[heblaj01]

An other tip from an experieced nurse (in the hospital oncology department) for minor non infected skin damage such as blisters, dryness, resulting from chemo:Ihle's paste.

This is normally used for babies. It is somewhat messy until it is absorbed since it should be applied in thick coats.

[irodriguez]

Hi Lindaw:

I am Ivan Rodriguez from Peru, my wife has HPR2 positive advanced breast cancer and I very worry for her. According with your notes, it is possible to get LAPATINIB in the market right now? if so I need to know how urgently. Can you help me on that please, you can reply me by this way or you can write me at irodriguez1956@gmail.com for more information. I know that LAPATINIB was approved by FDA but need to approve by the goberment in USA and Canada.
I will be very pending for your reply. Thank very much in advanced.

God bless you

Ivan Rodriguez

[lindaw]

Dear Ivan

I got lapatinib through my Oncologist . I have got it through the Expanded Access programme which the Lapatinib makers are offerring . I mentioned it to my oncologist as i found out from this board it was to be offerred for those who had recurred on herceptin through the EAP - or sometimes referred to as compassionate programme.Is your wifes oncologist aware of it?

Lindaw

[Sandy H]

Ivan, if you are not able to get the info you need from your oncologist you may want to talk to Joe/Christine founder of this site. Their number is 760-602-9178 in California. They have helped several people on this site including myself get into Tykerb trials. It is expected to get approved outside compassionate use within the next 6 weeks here in the US. I don't know about your country. I hope this helps. We will pray for your wife. Sending her a big hug. Sandy

[irodriguez]

Sandy:
Thank you very much for your information, I am going to try to comunicate with Joe a talk about my wife. My wife will have a interview with her oncologist tomorrow and they talk about the some treatment and I think about LAPATINIB too, The Dr. will tell us if they can get LAPATINIB or not in Peru. I hope the Dr. can help us. I am working in Venezuela right now for a couple of weeks and my family are helping to my wife.
Thanks again for your help and if I have some questions I will write you again.

Many Thanks

Ivan Rodriguez