doctors have given up on me

[hope]

Well I'm still not doing well. My right lung tumors are still progressing and I am on chemo. I take a low dose Xeloda (1500mg/day) due to severe side effects of Xeloda, weekly Herceptin, and Zometa. I have a exteme fatigue and shortness of breath eventhogh I am on oxygen but my oxygen saturation is always around 98-100% left lung remains clear. I recently got a plurex catheter drain in my right lung to help with my plural effusion before that I was going to the pulmonologist every 10 days to drain 1.5 L of fluid so the catheter has helped that somewhat. I am currently approved for the EAP study of Lapatinib but it is tied up in the clinical trials office at my cancer center waiting to be approved. Last I heard that it would go to the regulatory affairs committee next week for approval but won't be able to dispense until end of Sept. They all know at the cancer center I go to that I am waiting for this drug and this is my last chemo I can take as I failed every chemo approved for metastatic breast cancer and my oncologist will not repeat chemos or use chemos off lable.

So the problem right now lies with my oncologist. My onc. said that I can take my chemo or not its my choice. They do not know what to do at this point until I can get on Lapatinib. I would like to know what you would do in this situation? Do I contiue my chemo or not. Obviously my chemo is not working but I can't understand why my onc is leaving this up to me. I am not a doctor! I am still fighting for my life and my onc knows about this. Also my liver enzymes (AST,ALT and Alkaline phos) are increasing from 30 to 126 (AST), 39 to 70 (ALT) and 157 to 489 (Alkaline phos) in the last two weeks. These are big increases to me yet they refuse to give me a ultrsound on my liver so I don't know whats going on there. I haven't had any liver metastasis. If worse comes to worse I can change oncologists but I am very weak now and to do that is lot of work and it might even jepordize me getting Lapatinib on the EAP program. Thanks for letting me vent. Hope

[al from Canada]

Hope, my heart goes our to you. It sounds like your onc is failing you more than your body is.........change doctors!! For your onc to say quit chemo if you want means he's kissing you off, lapatinib or no lapatinib. Navelbine has been shown to be very effective with herceptin for lung mets and has a resistance recovery time of about 6 months, ie, if you've has it before past 6 months ago then it may work again just as effectively again. No scans with rising liver counts?..........I think it is time to change and please do it before you are too tired to. What about Genentec and pertuzumab?

Anything I can do.........Al

[Sandy H]

Hope, you may have to get ruley here as I did. I told them it doesn't make sense to me to have to wait for 10 weeks to get this drug. Perhaps, Joe can help you here. I got more then ruley and I won't go into it but I will call it fighting for your life. I was told several times,"you can sure get your point across!" I told them that is what this disease does to us. I would fight them to the bitter end. They will get it for you. Good luck and God Bless you. Sending you a big hug, Sandy

[Barbara H.]

Hi Hope,
My thoughts are with you and I agree with Al. Do what you need to while you have some energy.
Best wishes,
Barbara H.

[RhondaH]

PLEASE don't give up. I'll keep praying for you. Take care and many huggs your way.

Rhonda

[Tom]

Dear Hope,

Al and Sandy hit it on the head. Time to change the sheets, because the old ones are getting stinky. Also time to let the dogs out, as they say. Show them that you can bark, and WILL bite if necessary. This is your parade they are raining on, and it's time to make the doughnuts.

Well, since I can't think of any more cliches right off hand, just take your argument to them while you still have the fire in your belly to state your case. Let them know that you're tired of everybody sitting around jerkin' their gerkin, and that you need a short term plan to stay afloat until the lapatinib comes through. I know there must be hundreds of women scrambling for it, but that doesn't make your case any less important.

Remind them that the more guinea pigs they have in the EAP, the more "free" data they will have going into their FDA approval request. Granted, the information may not be "pure" enough for a true clinical trial, but we all know that anecdotal evidence and word of mouth go a long way in cancer research. Let us know what you have planned next.

Tom

[Cathya]

Hope;

I do so agree that it is time to switch onc's or at least to have someone forceful there with you at your appointments to make your demands and needs known. Do you have a trusted advocate who will talk for you, bring you where you need to go, fight for you when you are too tired to fight for yourself. It is time to make known your desires to this trusted individual as you have said that you are tiring. This does not mean it is time to give up, it just means that you need help. I don't know your circumstances....do you have a spouse, parent or child or friend who can help you now? Are you located near MD Anderson where there are the most clinical trials and very imaginative onc's? There are many other similar hospitals as well. What about Avastin? What can we do? We're here for you......who is there for you?

Cathy

[tousled1]

Hope,

My heart goes out to you. Don't ever let the doctors give up on you. You certainly aren't ready to give up. Demand that your doctor send you for PET/CT immediately. At least then he/she would know exactly what is going on. There are so many chemo cocktails they could be using until you can get into a Tykerb trial. Please do no give up. You have a lot of support from people on this site. If you are too weak to get around call the local chapter of the American Cancer Society -- they can arrange transportation for you. I'll keep you in my prayers.

[Vanessa]

You are in my thoughts and prayers, also. Please don't give up.

[StephN]

... and I never forget that, as I was once in a very precarious position that I managed to overcome. And it certainly was NOT easy.

My heart sank at your news as you have also been a brave and persistent fighter in this disease. I chime in with the others that you need a stopgap until Tykerb, and they best hustle their bustle on that. But sounds like less than 3 weeks till that comes through.

I cannot imagine your onc not wanting to get a fix on your liver enzymes and what may be the cause. Can you go and stand in his consulting area and tell him you need attention NOW?? Never mind an official appt. Get someone to take you - your daughter?

[lexigirl]

Don't give up! Find a new onc who will listen to you. There is always hope.

Love and Prayers,
Lexi

[Sheila]

Hope
Your name says it all....do whatever it takes, switch oncs., take an advocate with you, stand up and jump up and down on the table...demand what you want and what you need....we may all have this dreaded disease, but we all have the determination and fighting spirit to beat it....don't let them write you off....make your voice heard, it is your life. Maybe Joe can give a call to fast track the Tykerb for you.....you are in my prayers that this will get resolved quickly....and have them look into the liver enzymes as well.

[vickie h]

Please don't even think of giving up, or staying with that oncologist. I. too, was told a few months ago that "I had had a good quality of life and now we should consider doing more taxane drugs, get off herceptin, and continue with Avastin". I immediately called 2 other oncologists for second and third opinions, because it now comes down to the true fight. I am now with an Onc who has put me on Navelbine, kept me on Herceptin, and I am doing better, much better. In the first place, she is an amazingly compassionate Dr., all of the staff are kind and loving and treat me the utmost respect. One of the most important things in this battle is to know that your onc cares deeply about you, listens to what you are saying, and is someone you completely trust with your life. If those things don't apply, it is time to move on. Trust yourself, only you know when it is time for the answers you so desperately seek to be answered. Demand a scan or liver tests, and please don't wait any longer, time is of the essense. I know you are tired, so was I, but you also know in your heart that something is not right and you, and you alone, have that power to seek change, with God's help. Find someone (AN oNC) THAT CARES ABOUT YOUR FEELINGS, YOUR FEARS, AND TAKES THE REINS WITH YOU. It is never too late. My prayers are with you and my love also. Pick up that phone, gather your support, and move toward the new day ahead. Much love and compassion, Vickie h

[Lolly]

Dear Hope,
I think the others have given you some good advice, so I just want you to know I'm sending (((((WAVES OF ENERGY)))) your way to help you get mobilized for this next stage of your fight. Please don't give up yet, Tykerb is so close and it seems to me you just need a stopgap until then. We're with you, so gather your strength and push on.

[deb-steph]

i concur with what you've been told. don't know where you live or who your onc is but i would switch and i would let them know why. take someone to get in there face it works wonders sometimes. you might also contact the agency that regulates that particular doctor. i don't know if specialist have a special board or not but you can call his office and they have to provide you with a means of filling a complaint. trust me, doctors don't won't peers looking to closely at their work if it is shoddy. you keep fighting the fight. by the way, my youngest is named hope and she has been a continuous source of joy and support throughout this entire ordeal. she's ten and has a good attitude about my cancer so i will send out a prayer that you can connect with that spirit. remember, no one can make you feel small or insignificant without your permission. don't give it - give them the attitude that you're worth fighting for.

[heblaj01]

Hope,

When you meet your new onc ask him about the Doxil/Herceptin combo which in phase 2 trials reported earlier this year has demonstrated a high response rate (over 80%).
This high rate appears to reflect the highest preclinical synergy observed in cell studies for various combos.
Since each of the 2 drugs is already approved your new onc may be willing to prescribe the combo off label.
I have talked to one of the phase 2 investigators who told me that while this combo is slightly less gentle in terms of side effects compared to Navelbine+Herceptin, he might still prescribe it to an elderly lady with many other ailments should Navelbine+Herceptin start to fail.
So it may be worth checking.

[sarah]

Hope,
Don't stop fighting. At least speak to another onc and see if they can help until the other drug comes through. I totally agree with the other posts and hope you have a family member or friend nearby who can do some screaming for you.
love
sarah

[Patty H]

So you don't loose your place in line for the Tykerb, just tell your oncologist you want a second opinion. Then you can check our other oncologist and find out where you stand with the tykerb if you switch and I'm sure you'll get better treatment, that you deserve. Patty H

[Kaye]

Hope, my best thoughts are with you--don't know if this would at all be applicable in your case but th0ught I'd share in case it might be.
“Unusual three-drug combo inhibits growth of aggressive tumors”

“An experimental anti-cancer regimen combined a diuretic, a Parkinson’s disease medication and a drug ordinarily used to reverse the effect of sedatives. The unusual mixture inhibited the growth of aggressive prostate tumors in laboartory mice in research conducted at Washington University School of Medicine in St. Louis.

Although their drug choices may seem capricious, the researchers weren’t randomy pulling drugs from their shelves. They made their discovery using sophisticated methods for delving into the unique metabolism of cancer cells and then choosing compounds likely to interfere with their growth.

‘This study, led by Joseph Ippolito, a very talented M.D./Ph.D. student, demonstrates the importance of looking at tumor metabolism,’ says senior author Jeffrey I. Gordon, M.D., director of the Center for Genome Sciences at the School of Medicine. ‘Using a broad array of technology, we’ve obtained a view of the tumor cells’ metabolome (the set of small-molecule metabolites found within cells) and revealed aspects that were not expected and could be exploited.’

The findings, published in a recent article in the Proceedings of the National Academy of Sciences, expand upon earlier work by the research group, which demonstrated that aggressive types of neuroendocrine tumors - seen in some types of lung, thyroid and prostate cancers - produce high amounts of a chemical called GABA, a neurotransmitter.

Because of the abundance of GABA in these tumors, the authors previously proposed that the chemical could potentially serve as a marker for poor-prognosis neuroendocrine tumors. But the latest findings also show that the techniques used to decipher the biochemistry of the tumors can effectively be applied to seek drugs that will affect tumor metabolism.

The techniques link DNA microarray technology - which can pinpoint highly active genes in the tumors - to precise measurements of abundant metabolites and their potential byproducts within intact tumor cells using nuclear magnetic resonance (nMR) spectroscopy and mass spectometry. Software programs take this information and provide testable predictions about how these substances might drive the special metabolism of cancerous cells.

Investigating experimental mice that develop metastatic tumors of the prostate’s neuroendocrine cells, the researchers discovered that the tumor cells relied on molecules that transmit signals betweeen neurons. They found that the tumor cellls respond to GABA as well as to two other neurotransmiitters, glycine and glutamate.

‘The question was, “What are these neural signaling molecules doing in tumor cells found outside the central nervous system?”’ says lead author Joseph E. Ippolito, a member of the University’s NIH-supported M.D./Ph.D. Medical Scientist Training Program.

The reserachers demonstrated that the tumor cells have receptors on their surface that recognize these neurotransmtters and are activated by them. In addition, the tumor cells directly convert GABA and glutamate into sources of energy. Moreover, glycine was involved in a mechanism that increased the amount of fatty acids - an important source of energy - in the bloodstream of the lab mice.

‘We showed that the neurotramsitters GABA, glycine and gluatate not only stimulate proliferation of the tumor cells, but they also are able secure sources of energy for the cells,’ Ippolito says. ‘In a way, the tumor cells eat their own words.’

‘Having identified a key vulnerability in these aggressive neuroendicrine tumor cells, the researchers looked for a way to exploit it. They selected agents already approved for medical use by the Food and Drug Administration.

Two drugs - amiloride, a diuretic and carbidopa, used to treat Parkinson’s disease - exert their effects by inhibiting the very same mechanisms the research group had identified as important for the tumor cells’ energy-gathering reactions.

They combined these two drugs with a third drug, flumazenil, which is ordinarily used to reverse the effects of sedatives. Flumazenil binds to GABA receptors on the surface of nerve cells, and the researchers theorized that it could also inhibit GABA signaling between tumor cells.

‘We propose that this might be a potential therapeutic regimen for patients with aggressive neuroendocrine tumors,’ says Ippolito. ‘Since the drugs are already FDA approved, they could be more quickly used as experimental therapeutics.’

Examination of gene expression profiles of more than 400 human cancers showed that the genes encoding the enzymes vital to these aggressive neuroendocrine tumors were also expressed at high levels in some non-neuroendocrine cancers. This suggests that the three-drug therapy could work for many kinds of cancers, according to the study authors.

‘This approach is very powerful,’ says Gordon. ‘By combining a variety of experiemental and computational methods that monitor the expression of genes encoding enzymes and their biochemical products, we can explore the metabolism of these cells, looking for unusual pathways that might reveal their potenial vulnerabilities. Then we can see if medications already exist - ones whose mechanism of action is known and whose safety has been established - that can be used to target components of these unusual pathways, test them in animal models of human cancer, and if the results look promising, bring them to the patient’s bedside as part of a carefully controlled clinical trial.’

###

Ippolito JE, Merritt ME, Backhed F, Moulder KL, Mennerick S, Manchester JK, Gammon ST, Piwnica-Worms D, Gordon JI, Linkage between cellular communications, energy utilization and proliferation in metastatic neuroendocrine cancers. Proceedings of the National Academy of Sciences 2006 AUG 15; 103(33):12505-10

Ippolito JE, Xu J, Jain S, Moulder K, Mennerick S, Crowley JR, Townsend RR, Gordon JI. An integrated functional genomics and metabolomics approach for defining poor prognosis in human neuroendcorine cancers. Proceedings of the National Academy of Sciences 2005 Jul 12; 102(28):9901-9906.

Funding from the National Instututes of Health and the American Cancer Soceity supported this research.

Washington University School of Medicine’s full-time and volunteer faculty physiciians also are the medical staff of Barnes-Jewish and St. Louis Children’s hospitals. The School of Medicine is one of the leading medical research, teaching and patient care institutions in the nation, currently ranked fourth in the nation by U.S. News & World Report. Through its affiliations with Barnes-Jewish and the St. Louis Children’s hospitals, the School of Medicine is linked to BJC HealthCare.”
“Conact: Gwen Ericson
ericsong@wustl.edu
314-0141
Washington University School of Medicine”
“Public release date: 7-Sep-2006”

[R.B.]

If you have not thought about diet as an adjunct you might like to look at the omega three six posts.

This one shows for at least one person it may have had significant impact.

http://www.her2support.org/vbulletin...ught+provoking

You may also like to look at the Greek Diet post using the search facility above. Included are threads where they are using omega three infusions with low dosage cox blockers as part of the treatment in trials for various cancers. If your digestion is poor infusion may be a way of trying to kickstart your fats into balance which may or may not help, on the edge but if you really are running out of options.....

Please DO talk to your doctor about dietary changes. Fats have powerful impacts and there is a limited group of people for whom they can cause problems. You could always print out some bits and take them with you.

There are also diet posts under the breast cancer diet.


RB