Any suggestions

[Lyn]

Hi all, I saw my onc today when I had my triple dose. I asked him how long I should be on Xeloda and Cycloblastin, guess what, ah! he doesn't know, maybe because I was the one who asked for it in the first place, he hadn't used this combo before. I then asked what experience he had with the 5FU cream because I am not sure how long I need to use it, guess what, ah! he doesn't know, same again, he actually thought my breast didn't look any worse than the last time he saw it, well I had news for him, it looks a bit like radiation burn, so I asked if the cream only worked on the mets area or where the cream was and he said where the cream was but to me it has taken on the same pattern as the radiation, so I don't know that either. Then I asked how were we going to know what was working, same answer again, so I said maybe I will have to remain on Xeloda maintenance dose indefinately and he said he would be happy with that. Short answer was he said I ask too many hard questions, so I said well I will go home and ask my buddies and let him know. I told him that I had just been informed that I had been on Herceptin for 4 years and he had a look in his book and said, I know, I was number 38 to have it, must be in Australia because there are only 2 more at my hospital I just found out, but over 1600 all up, he then said "It is a Miracle I am still alive", guys what do you make of this, my hands are up in the air.

Love & Hugs Lyn

[Unregistered]

Have you ever had the HER-2 blood test done? This can give your oncologist information instead of relying on guesswork.

[Lyn]

Hi there, I don't think it is available in Australia yet, my onc probably doesn't know it exists and he is supposed to be one of the best in Australia, we are very backward here when it comes to progress, so much for the slogan for Queensland where I am as the "SMART STATE" what a joke, if it weren't for our own Prime Minister's Wife getting the big C we wouldn't even have Herceptin available in Australia. By the way they kept it quiet about what she actually had or any updates of how she is doing, so much for lead by example. I am lucky I have been on it for 4 years by tracking it down myself and putting the info in my onc's face to contact Genetech at their request. I will make enquiries about the blood test and see what I can come up with, the whole treatment of C in Australia is guess work and we are supposed to be leading in research and discovery, I am still waiting for a response from Parliament as to why we have to trial a further 5 years drugs that everyone else in the world can have, Yep! definately the "BACKWARD STATE" and country.

Love & Hugs Lyn

[Cindi]

Lyn,

I too, get a lot o the "I don't knows" from my Onc. or one of her favorite expressions is "that's definitely in the realm of possibilities". Since I have no distant mets yet (still confined to skin and soft tissue in the chest area), my case somewhat baffles them and I know this (It's been a total of 4 years, 1 1/2 of them with these mets).

So, I have to say that since you have beaten this disease for soooo long, I think that truly your Onc. doesn't have too many answers. Sometimes I'll bet your Onc., just crosses her/his fingers sometimes regarding your treatment, LOL.

Keep being the medical miracle that you are, Lyn.

God Bless,
Cindi.

[Esther]

Lyn I get alot of "I don't knows" also. I'm the sickest patient the LLU Breast Cancer Center has ever had diagnsed, my liver was shutting down, my skin was yellow, even my eyes were yellow.

In the beginning, they thought I wouldn't make it to 2 months, but were hoping for a year. At a year I celebrated by skiing in Aspen for 10 days. My liver and bone mets are now in remission, and have been on just Herceptin for 8 months now. I am almost 2 years out from original mets diagnosis.

My onc truly doesn't know what to tell me, because he hasn't had anyone go before me in this manner.

You and I are probably the new breed of walking miracles changing the face of her2+ cancer patients. In 10 years they will be able to look at us and extrapolate information to be better able to inform the patients coming after us. Who knows? We may still be here in 20-30 years telling our story.

[uma]

Hi, Guest,
So far, i knew only the IHC and FISH tests, which are done on the tissues. I was told the blood test is still in research phase, and so not yet reliable. Can you name that test please, I will ask my Onc to do it for me ?
Uma

[Barbara H.]

Hi Lyn,
You are such an incredable fighter and an inspiration to me and I'm sure to many more that read your posts. Is there anyway that you could come to the US or to a large cancer center in a country that would allow you to get a second opinion and have a HER2 test done? Does anyone know of a clinic or hospital that would help with some of the costs? I would like to see you receive more help than you are getting. There are no boundaries between countries on this board, and in fighting for our survival we should all have access to the newest treatments that are available. Funding for cancer patients should consider these issues.
Best wishes,
Barbara H.

[al from Canada]

Hi Lyn,

Well, there's probably not a survivor on this board who hasn't heard that ubiquitous phrase. How about we change that phrase to "go to www.her2support.org (http://www.her2support.org) "
What really scares me are the cancer patients who don't dig deep enough to get that answer, because even "I don't know" gives you some information.
Keep digging...
Al

[Lolly]

Lyn, you're gonna love this (well, maybe not ), but your description of the rash rang a bell in my head and I remembered a discussion on the original HER2 Support site, a looooong time ago...here's the context of the article from CancerConsultants:

What is radiation recall?

Radiation recall is a severe skin reaction that develops when chemotherapy is administered during or soon after radiation treatment. It usually appears on the area of skin where the radiation was administered several weeks to months after the radiation was administered.

What causes radiation recall?

The chemotherapy drugs that have been reported to cause radiation recall in more than 10% of patients include:

Actinomycin (Cosmegen®)
Doxorubicin (Adriamycin®)
Methotrexate (Rheumatrex®)
Fluorouracil (5-FU)
Hydroxyurea (Hydrea®)
Paclitaxel (Taxol®)
Liposomal doxorubicin (Doxil®)




What are the symptoms of radiation recall?

Radiation recall is a rash that appears like a severe sun burn. It is characterized by one or more of the following:

Redness
Tenderness
Swelling
Wet sores
Peeling skin
Discoloration after the skin has healed




What is the treatment for radiation recall?

In some cases, symptoms may be severe enough that chemotherapy may have to be delayed until your skin heals. Usually, your doctor will try to give you medication to reduce the inflammation so that you can continue receiving the chemotherapy. Corticosteroids, in the form of a pill or a cream, may be prescribed for this purpose.

What else can I do?

It is very important to protect the skin that is irritated:

Stay out of the sun
Use sunscreens when you must be exposed
Avoid tanning beds
Wear loose, non-restrictive clothing
Cancer (http://www.cancerconsultants.com/)Consultants.com (http://www.cancerconsultants.com/) ©1998-2005, last updated 05/04, Authored by Charles H. Weaver, M.D., Managing Editor and C. D. Buckner, M.D., Scientific Editor. CancerConsultants.com, All Rights Reserved.

The information contained above is general in nature and is not intended as a guide to self-medication by consumers or meant to substitute for advice provided by your own physician or other medical professional. The reader is advised to consult with a physician or other medical professional and to check product information (including packaging inserts) for changes and new information regarding dosage, precautions, and contra indication before administering any drug, herb, supplement, compound, therapy or treatment discussed herein. Neither the editors nor the publisher accepts any responsibility for the accuracy of the information or consequences from the use or misuse of the information contained herein.

[Lyn]

Hi all, well my girl friend keeps saying she is going to take me to the US if we can't get answers here. Lolly I like you insert, I think that is what I have at the back of my neck, I had it biopsied to make sure and for a change it was OK, I thought that maybe my breast reoccurence might have been the radiaiton too, no such luck, but I will pass this onto my onc, you can bet he doesn't know about it. I am also going to warn him about the sugar level with Xeloda, just what I need a broken shoulder bone, couldn't just fracture it had to snap, I have upped my antidepressants again, this was just about the last straw, then my lovely daughter put a plastic chair in the shower and lovingly washed my hair and shaved my legs for me so I felt a lot better, she said she would always look after me, hang on just got to wipe away a tear or two. I got around the typing bit, I just slip my arm out of the sling and press my elbow into my body, so I don't feel a thing. When I fell I went straight for the Ordine (liquid morphine) it did the trick, I had been taking it for my other shoulder which has gone out in sympathy for the original fracture to that shoulder, the one the will definatley need replacement now, at least I am aware of the pain I am going to expect, I am ok unless I want to move my arm, now I definately can't hang out the washing, will have a go at driving tomorrow, I hate being stranded, so my son is taking me to see the orthopaedic surgeon at our large Brisbane hospital, will let you know what he intends doing. Bad enough fighting BC let alone the baggage I have collected over the years.


Love & Hugs Lyn

[Unregistered]

The blood test is not just for research. It is available at national reference labs like Quest and Lab Corp. It is called the HER2 serum test.