Update on Hope-anyone on Xeloda?

[hope]

Well it has been a crazy 3 weeks. About 3 weeks ago I got the results of my routine chest CT scan and unfortunately my lung tumors on my right lung are growing again and this time they are growing very fast largest one now is 8.6cm. My left lung has some tumors but they are very small and appear to be stable so I am basically living off my left lung. I has been having lot of shortness of breath, coughing, and general lousy feeling. I also had to get fluid drained from my right lung twice. I feel better the day after the procedure but then I get all those symptoms again. These past two Saturday's I have gone to the emergency room and last Sat. they admitted me into the hospital. They did a bunch of tests and found out that all I needed is oxygen. So now I'm out of the hospital and carry an oxygen tank with me and I feel better. I don't need oxygen all the time only when I'm walking.



Previously I was on Abraxane and yesterday I started Xeloda to try to shrink those lung tumors and possibly get off the oxygen and will probably get a procedure done to either put a catheter in to drain lung fluid as it builds up or get a procedure done called a plurodesis in which they seal off the pockets of fluid so it can't build up again. The Pulmonary doctor and I still have to decide on this. My doctors and I agree that the fluid build up is caused by tumor progression. I will still continue to take weekly infusions of Herceptin

I had tried Xeloda about a year ago but was hospitalized for infection and low electrolytes when I got out of the hospital Abraxane was just approved so I went on that not really failing Xeloda. I was on too high of a dose 4000mg/day so now I'm taking 500mg in morning and 500mg at night for a total of 1000mg/day. Just started this yesterday so no side effects yet. I do have some questions though. If you are on Xeloda currently, what is your dosage? How are you tolerating it? Is is working? Also I know the perscribing information says you shouldn't take any folic acid with Xeloda including mulitvitamins. My multivitamin has 400mcg of folic acid, should I stop taking this? or do you take multivitamins without folic acid?

I'm hanging in there but it has been rough. I hope Lapatinib is approved soon because I have failed now 8 chemos and I'm running out of options. Keep me in your prayers. Hope

[Lolly]

Dear Hope, I'm sorry to hear you've been having such a rough time of it, but hang in there as I sincerely think you'll be feeling better soon.

Xeloda is a very effective med; I personally have a chemo buddie who's lung mets were wiped out with Xeloda/Herceptin. I'm on the same dose as you, 500mg am/pm, continuously; no breaks as some have reported when on a higher dose. My onc feels the lower dose is just as effective when given continuously, not allowing the cancer to recuperate in between. I've been on it for 2 months now, in combo with Navelbine/Herceptin and since adding Xeloda have seen dramatic shrinkage of my axilla tumors (they were only stable on N/H so that's why Xeloda). I've had no side effects other than lowered blood counts, but I chalk that up to Navelbine as that was a problem anyway BEFORE adding Xeloda. I've had no hand/foot syndrom, no neuropathy, no hair loss etc.

My onc DID have me stop taking my multiple vitamin because of the folic acid, and also my Vit.B supplement, same reason. Apparently folic acid can increase the chance of side effects. Check with your onc on this, some differ, but I wouldn't be surprised if you're advised to stop the multi. I haven't found a multi without folic, so I just try to eat well and take a few solitary vits I've cleared with my onc, such as 1000mg vit C, Calcium and Magnesium, etc.

Best wishes with the Xeloda, I hope you find it effective and trouble free, and good luck with your decision on the lung fluid. I had a friend recently undergo the "lung talc" procedure, pleurodesis (?), with great results, so have courage.

<3 Lolly

[Sherryg683]

If I ever have to get on Xeloda again, I will request that I get it done like you have Lolly. I would rather take a smaller dose and stay on it. I could not tolerate the 3,000mg dose. My feet are just now getting back to looking halfway normal. They actually looked like I had walked on hot coal and they felt pretty much the same. I only had one outbreak like this with my feet, but that was enough. My hands were always messed up. I think the smaller dose is something I could have tolerated. It is such a good medicine and I responded well to it, it was just so hard on me...sherryg683

[sherri]

Dear Hope,

You are in my thoughts ans paryers. I hope you get better soon.

Big hug,

[Shell]

Hope-

I am on xeloda, and was in the clinical trial now getting tykerb. I have been on xeloda for 10 months - the dosage is based on weight, but I was started out at 2500mg/m2, which for me was 4300 mg/day. After having virtually no quality of life problems with my previous chemos, (TEC/herceptin/navelbine), I got every symptom in the book with xeloda after 2 cycles (of 14 days on/7 off). I took a break from it, and then the dosage was reduced by 25%, to 1875mg/m2, which for my weight is 3300 mg daily. Occcasionally I have to take some breaks on that, but not for too long. Oh, and the only symptom I get now is the H/F...

the clinical trial seemed designed for those of us who have failed herceptin, and I would certainly look at the links Joe posted to call and see if you can get tykerb along with the xeloda. Don't be put off if when you try it on the computer, it says you don't qualify - that's what happened to me, but i followed up with a phone call to the nurse handling the clinical trial at the nearest hospital, and she told me i qualified...

i hope things improve for you xeloda, and let me know if you have any other questions...please don't let your symptoms get too bad - don't try to "tough it out" - as soon as they start, keep your onc/nurse posted, so they can evaluate you and make any changes...

regards,
shell

[Lisa]

Hope,

Get better! That's a prayer and a command. (Only wish I could command such things.)

I'm on Xeloda, along with Herceptin and Zometa. Side effects are my hands/feet syndrome. It seems to come and go. Keep lotioned on your hands and your feet. When I start having these issues, my onc lowered my dose from 1500 mg. twice a day (3,000 mg.) to 2500 every other day. I don't know that it really helped. And I haven't had scans since starting Xeloda. But, like you, I feel like I've gone through almost the entire chemo menu. We have to keep fighting, though.

Love and light,

Lisa

[Cathya]

Hope;

I just remembered a post put up by Lolly which might work for you in order to get Lapatinib NOW. God bless

Cathy

Contact Genentech about Lapatinib?
CancerGuide: Clinical Trials and Experimental Treatments


http://www.cancerguide.org/offprotocol.html (http://www.cancerguide.org/offprotocol.html)



Formal Compassionate Use Programs
A formal compassionate use program is a mechanism for getting an unapproved but promising new treatment to patients who would otherwise be unable to receive it. Compassionate use programs are for people who have a life threatening with "no comparable or satisfactory alternative drug or other therapy available to treat that stage of the disease in the intended patient population" (in the words of the FDA regulations).

Formal compassionate use is a bit like a clinical trial in that you will still have to meet specific requirements such as the type and stage of disease, and usually you must be treated by doctors who participated in the clinical trials for the drug, but compared to trials, the requirements are somewhat relaxed. If you qualify for an open clinical trial of the treatment, obtaining it through compassionate use is not an option.

According to the FDA regulations, compassionate use programs are normally for drugs which are in phase III or have completed accrual to their trials (it takes significant time to allow the data to mature, compile it, and get it reviewed by FDA - often several years), but the regulations do say compassionate use might be possible for some drugs which are only in phase II testing. I presume there would still have to be applicable promising results - such as spectacular results from an ongoing phase II trial. You won't find compassionate use programs for drugs which are in the very early stages of testing. If you just heard about the latest cancer cure for mice on the nightly news, you can be sure there will not be a compassionate use program. There have to be results in people with your type of cancer.

Although the FDA has to approve compassionate use programs, they normally do so without fuss. Whether there is a compassionate use program largely depends on whether the drug company has decided to have one. The decision depends on many factors including the cost which can easily run into the millions and whether there is an adequate supply of the drug (which is often an issue). In the past, agitation by organized patients has sometimes made the difference. For instance, Genetech granted expanded access to the breast cancer drug, Herceptin, only after breast cancer activists conducted an intensive campaign. ("Demand Grows for Early Access to Promising Cancer Drugs",Journal of the National Cancer Institute, November 20, 2002)

Finding Compassionate Use Programs
If you're interested in a particular drug you can find out if there's a compassionate use program by contacting the company. The first step is to find their web site.

[Cathya]

Hope;

We are thinking of you and praying for you.....take care.

Cathy