Ina, I am so sorry to hear that Joyce's disease has progressed.
I agree completely that as the patient she has the right to ask for treatment.
However I am also of the opinion that it is the physicians right to refuse to treat if it is not in the patients best interest.
From your description I do not believe it is in Joyce's best interest to progress with aggressive surgery, radiation and chemo. That time has passed. Why is there such a delay in just inserting a PEG for feeding purposes. This is a simple out patient procedure.
To be honest, I am of the opinion that your family should be doing all to keep Joyce comfortable and pain free. Involve Hospice, and enjoy the remaining time she has left.
I am so sorry , Tammy

The peg tube will be inserted next week, the delay is due to the funds that my husband will be sending next week. All expenses are coming from her children here. It is not only emotionally and intellectually draining but financially exhausting. They have NO HEALTH INSURANCE.

The decisions for chemo and radiation has not been made, Joyce has to regain the strength and nutrition needed before they will discuss the next step. It will take a few weeks to a month for her to gain weight since she is only 88 pounds or may be less.

Thanks

Has Medicare or Medicaid been looked into? Just based on her age, finances, there should be some kind of assistance out there or work out a payment plan with the hospital not to delay any type medical care. Usually the hospitals social worker can help. Good luck.

Unfortunately the only assistance for senior citizens is a discount , minimal. We are hoping the tube will be inserted next week. No plans of any additional treatment until she regains health or a big of weight. Surgery is out of the table and will not be considered the first treatment. Chemo and Radiation combined is the choice of treatment after she restores health.

Paul, Joyce lives and is being treated in the Philippines.


Ina, Im just wondering if your family has ever discussed having Joyce treated here in the US? Just an idea.

Hello everybody, Joyce is unable to travel due to her health and without health insurance here is far worst.

I just got an update that her potassium level is extremely high due to her kidneys (stage 4 of kidney life) now causing irregular heart beat. Once potassium levels are back to normal she will have the peg procedure.

I think her cardiologist would not give authorization to have surgery.

Hi Ina,

I'm very sorry to hear of your and your mother-in-law's situation. I am the same age as she is.

You correctly suspect that without a PET scan, many cancers can go undetected. Both of my recurrences were only detected after going mostly un-noticed on a CAT scan.

As to the amount of time she has remaining, I don't think anyone can answer that, but as much as I hate to say it, I doubt that she will see the new year.

Bless you, and your mother-in-law. You have my very best wishes for the best possible outcome.

Update as of today, May 23, 2013.

Joyce will receive her Peg tube this Sunday.

Tentative schedule of her chemo Erbitux is June 6, 2013 depending on her current health status as of that week. I believe that radiation will start the same time since she was already fitted for the radiation mask.

What is the maximum allowed chemo treatment? She received series of 6 November to Jan 2013. Now she will start Erbitux with maximum radiation treatments, I believe 34.

I know of some people that are on long term Erbitux for a year for palliative care, and don't know of any about any maximum allowed chemo, but most use trial based therapies, may switch to another to avoid developing a resistance or when no improvement is seen. Some targeted therapies need to be long term in the palliative setting, like 6 months to a year for benefit, some chemos are given in cycles, then stopped, and restarted again.

I had Erbitux with radiation, for 6 weeks, but that was for curative intent. The first week is a loading dose, based in your weight, about 470mg for me, along with an infusion of Benadryl, a Tylenol, Hydration. After that were weekly infusions around 250 mg. The first infusion they monitor you closely since a small percentage have a severe allergic reaction, heart failure from it. The worst part of Erbitux is the rash, which can be severe, and the itching, skin dryness drove me crazy. They will give you antibiotics once the rash appears, and the best to use they say is Minocycline. I had 50mg capsules 3x a day.

Good luck.

[quote=PaulB]I know of some people that are on long term Erbitux for a year for palliative care, and don't know of any about any maximum allowed chemo, but most use trial based therapies, may switch to another to avoid developing a resistance or when no improvement is seen. Some targeted therapies need to be long term in the palliative setting, like 6 months to a year for benefit, some chemos are given in cycles, then stopped, and restarted again.

I had Erbitux with radiation, for 6 weeks, but that was for curative intent. The first week is a loading dose, based in your weight, about 470mg for me, along with an infusion of Benadryl, a Tylenol, Hydration. After that were weekly infusions around 250 mg. The first infusion they monitor you closely since a small percentage have a severe allergic reaction, heart failure from it. The worst part of Erbitux is the rash, which can be severe, and the itching, skin dryness drove me crazy. They will give you antibiotics once the rash appears, and the best to use they say is Minocycline. I had 50mg capsules 3x a day.

Good luck.

[/quote]


Good morning Paul, I am just wondering how would the severe skin reaction affect the 3 lesions/tumors on her face.

Joyce has decided to do full blast treatment. She feels that this is her last chance for survival.

Let us hope for the best for her. Prayers needed this coming weeks.

Thanks