Here I go again............

kareneg · 02-14-2007, 10:59 AM

Well I got the results from my cat scan yesterday and things are not good, not only are the liver mets worse but I now have new growth on my pancreas. I am so scared, the Xeloda, Tykerb and all my other treatments only worked for a small amount of time. Starting on Friday I will go on Doxil and Herceptin. I have never herd of mets to the pancreas this really scares me I just pray this new treatment works and works good. Has anyone had a good response with the Doxil? Has anyone had mets to the pancreas? I refuse to give up I have been batteling this monster for almost nine years now and I refuse to give in to it. I f anyone has any info on this new treatment I truly appreciate it. Thanks in advance.

Mary Jo · 02-14-2007, 11:25 AM

Hi Karen,

I'm sorry I do not know anything about this new treatment but did want to offer my support and encouragement to you. Life can be so difficult at times but hopefully the love and encouragement you receive from others can help in a small way.

Love -

Mary Jo

StephN · 02-14-2007, 11:38 AM

Sorry to hear your results on Tykerb are not better.

Doxil was used by a friend of mine for advanced ovarian cancer. This worked to keep her going for the better part of a year, then she had other problems take over. She felt pretty well on this drug and was able to travel to Europe and New Zealand.

Is there any possibility of a procedure such as cyberknife to take out some tumors??
Keep that spirit strong and hang in for some of the new trials that are just starting that Becky talked about after San Antonio.

lightsteve · 02-14-2007, 11:45 AM

Sorry to hear these developments. my wife is on Doxil after some very fast-moving progression while on Herceptin. Clearly Doxil is working for her (she has had 3 rounds), so I hope it will for you. Best of luck to you!

Steve

fullofbeans · 02-14-2007, 12:08 PM

Dear Karen,

I am sorry to hear that things are not going the right way, I wanted to offer my support and to encourage you in your fight. Please for all our sake do not give up you have fighted this for 9 years and you can keep on. All the best with Doxil and remember that there are still options available, always.. For example and just as an idea: if you can control liver mets for a while perhaps with local treatment then it will give you time to wait let's say for the DCA trial that is meant to take place in Alberta Uni in a not too distant future..

Lots of love
Karina

PS: sorry I do not know anything on pancreas mets.

heblaj01 · 02-14-2007, 01:44 PM

Karen,
The probability is quite high that the Doxil+Herceptin combo is going to work for you based on the high response rates observed in phase 2 trials in 2006 (52% plus 38% stable disease).

You may also ask your onc if supplementation with omega-3 fish oil pills is indicated based on its benefits in other types of cancers & on this article for pancreas (although not necessarily metastatic, the text is not clear on that):

http://jn.nutrition.org/cgi/content/full/129/6/1120
Fish Oil–Enriched Nutritional Supplement Attenuates Progression of the Acute-Phase Response in Weight-Losing Patients with Advanced Pancreatic Cancer

Mary Anne in TX · 02-14-2007, 06:11 PM

What a raw deal!
I'll be praying right along with you, Karen, that the new treatment is just exactly what is needed and stops that new spot in it's tracks! I'm so sorry that you even have to have this battle again, but I'm so glad you are a fighter and are ready for this new treatment. God bless you in your new fight! You can do it.
mary anne

MJo · 02-15-2007, 06:06 AM

I trust that the doxil and herceptin combo will nuke those mets down to nothing. Look forward to hearing how you are doing.

kareneg · 02-15-2007, 07:31 AM

Thank you all so much for the prayers and all the information it means the world to me. I start Doxil tomorrow so I will post how I am feeling when I get home, and I never ever will give up in this fight no matter how bad things are looking. Each and everyone of you are a source of strength for me and I love you all. Heres to kicking some butt tomorrow!!!!!!!! To be continued..........

Sheila · 02-15-2007, 09:11 AM

Karen

Here is hoping that the Doxil was easy on you, and not on the mets! You have a great spirit and strength...so keep it up, and you are in our thoughts and prayers that the new treatment will kick butt on the mets.

kareneg · 02-17-2007, 05:25 AM

Well the first treatment went well. As soon as I seen the color of the Doxil it brought back the memories of the Adrimycin yuck! lol. But it was a breeze I am going to take good care of myself and hope for the best. My first set of bloodwork is set for March 2nd and I hope to have good results. Thank you all so much for all you information and well wishes.

MJo · 02-17-2007, 06:27 AM

RE: Needles and Adriamycin. LOL. How well I remember those big red needles. I couldn't believe they were going to shoot three of them into me. Immediately had a panic attack. They had to sedate me to get the stuff in. I'm glad the treatment was a breeze for you, and I also look forward to good news from you. All the very best...

sassy · 02-17-2007, 08:08 AM

Karen,

Keeping you in my thoughts and prayers for good response.
________
Colorado Medical Marijuana Dispensary

Lolly · 02-17-2007, 11:37 AM

Karen, I'm so glad to hear the first Doxil went ok and your spirit hasn't been quenched; hope it's a KNOCKOUT on the cancer!
Also, one of my chemo buddies has been on Doxil for Inflammatory BC, and it's really cleared it up, so hang in there as I believe from what I've read and the other's experiences that it's a very active agent.

<3 Lolly

Merridith · 02-17-2007, 12:23 PM

I am so sorry to hear that your cancer has spread to your pancreas. This is a serious development.

Maybe now is the time to approach your doctor regarding more experimental phase 1-2 trials to see if any might be of benefit to you. Have you thought of participating in any of the vaccine trials?

Here is one that you might consider looking into. http://www.her2support.org/vbulletin...ad.php?t=26934

At a minimum the vacination won't hurt you and it's easy to take physically. This particular vaccine appears to have synergy with Herceptin to increase it's potency.

You should also read the "news" page of this forum and see if there is anything that sounds useful that you might want to bring to your doctor's attention for comment. Because we have a rarer form of cancer - some doctors might not be as versed in all the latest developments around it. Some doctors might concentrate their reading & study times with the more common cancer forms that would benefit the majority of their patients.

I think that it helps to be a strong self-advocate.

I wish you courage and luck on this journey.

Regards,
Merridith

tousled1 · 02-17-2007, 02:12 PM

Karen,

Glad that you tolerated the Doxil well. I remember when my son had leukemia, his onc said that the brighter the color the drug is the more powerful it is. Praying that this will work for you.

Val Pfeiffer · 02-18-2007, 10:17 AM

I have never heard of spread of Her2 BC to the pancreas either. Was your doc surprised? I thought that the "Big 4" for us were bone, brain, lung and liver. Are they sure it's a Her2+ met? I often wonder what the odds are that someone with a Her2+ BC would get another type of cancer somewhere else...

Good luck with your treatment!!
Val

heblaj01 · 02-18-2007, 11:38 AM

Karen,
Val,is right in stating that metastatic pancreas tumors from breast are rare.
I found an 2003 article which estimates their frequency at about 3% & it speculates that because these tumors are slow growing & symptomless for a long time,that their frequency may rise as patients are survaving longer with better treatments for the primary breast cancer. The first symptom appears to be osbtructive jaundice.
In one case report a proposed test of the primary tumor to confirm whether or not the pancreas tumor is secondary to breast is described as follows:

Immunohistochemical staining was performed to confirm whether the pancreatic tumor was primary or secondary. Human milk fat globules 1 and 2 and gross cystic disease fluid protein-15, which characteristically exist in normal breast tissue or breast carcinoma, were expressed both in the primary breast tumor and the pancreatic tumor. In contrast, both the anti-estrogen receptor and anti-progesterone receptor antibodies stained positively in the primary breast cancer; however, neither of them was positive in the metastatic pancreatic tumor. We report a rare case of a patient who presented with obstructive jaundice from a pancreatic tumor metastasizing from breast cancer and in whom immunohistochemical staining using the antibodies unique to the mammary gland was effective for the diagnosis of this secondary tumor.
An other research paper reports a small percentage of pancreatic cancer cases showing HER-2 involvment. This may mean that Herceptin alone may not work in the majority of cases.

Because metastatic pancreas is so rare I wonder if a PET/CT scan would not be indicated to confirm a possible false positive of the CT scan.

kareneg · 02-18-2007, 07:40 PM

Hi ,
When I seen my doctor he said that there was a growth on my pancreas. It is aroung one inch. He also said he cannot rule out that it is breast cancer or a cyst. I am praying it is a cyst. But he explaned it to me that he is going to treat it as cancer. And the Doxil should help me. Should I demand a petscan. He also told me that my liver is starting to show signs of stress with elevated blood test. but that it is not that bad. Easy for him to say. I have no signs at all of even having this horrible monster no pain no jaundence nothing. I was taken a back whe he told me about my pancreas. I have nevr had a petscan is it a better test than the cat scan? Thank you so much for all of the information it really helps.When I went to see my doctor I was alone too so when he told me about my pacreas I really don't remember what else happened. Next time I go I will brig my husband he remembers everything. I guess my question is will the pet scan tell us if the growth on the pancreas is cancer or a cyst. Thank you all so much for the help.

heblaj01 · 02-18-2007, 08:50 PM

Karen,
If,as you tell, your onc is not sure if it is a tumor or a cyst in or near the pancreas, then this is one more reason to have a PET/CT scan which will determine if it is malignant or not. The difference is important since a cyst is not malignant & is usually ignored unless it is growing quickly which not the case in most instances.
Since this is a single spot in the CT scan of the pancreas, should the PET/CT scan turn out to be positive (malignant), I would ask in advance a second PT/CT scan a hour or so after the first one to eliminate the possibility of a false positive. The second scan is compared to the first one & if it does not show an increase in the image uptake, then it is a false positive.(If it is a false positive, the second scan should actually show a decrease of the uptake which is a number usually between 0 & 7, called SUV. The smaller the number, the better).

I think a PET/CT scan provides more info than a CT scan & reduces the number of possible false positives.
Even if the results of the PET/CT scan,whatever they are, do not make a difference in the choice of the treatment your onc has already selected, you will at least feel relieved of a mental burden if they show it is a cyst.