After 2 surgeries and chemo from October to January the cancer of Joy is back now more visible to the naked eyes, It is now in expose like an open sore blister.

My husband's cousin that is a doctor will have a meeting with the oncologist to determine the next step. Joyce doesn't want to be touched anymore. She even barely survived the chemo.

Any thoughts?

I am so sorry to hear about Joyce's terrible ordeal. I hope she is able to get suitable pain releif. My thoughts are with her and your family. Sally

Ina Im very sorry to hear about the latest update on Joyce. Poor thing has been thru so much already. To me it sounds like she has made her decision to not have any more treatment. Without treatment this will only get progressively worse.

Im not sure what is offered in her country. Here in the US we have hospice to help with a persons end of life issues. Here its ok to call them well in advance to help with the patient. Ive heard this is very comforting and invaluable to both the patient and the family involved.

As always, wishing you and Joyce all the best.

Why no rad?

Perhaps contact Hospice.

I read that no matter what the lesions should be removed. Josie will not survive chemo and radiation. She is literally skin and bones now. She will not survive any more of those.

So my question is - - is only a matter of time?

Likely - unfortunately if it goes untreated it will kill her. Call a hospice they will manage her pain. Hugs to you and your family.

Sorry to say but by the time other posters have reported cancer breaking through the skin, the end was very near but we are not there and we are not doctors of any kind so if I were you I would ask her doctors if they think you need to get Hospice involved.

Update is to put a peg tube as soon as possible. Josie is severely malnourished. She can not have any further treatment until she is up to good health. Once she regains weight and strength they will perform surgery to remove the oral cancer on her face and do aggressive treatment of both chemo and radiation.

Where is she being treated?

I'm sorry but this just doesn't make sense at this point and judging by your description of the cancer and her age and her overall health I don't see how they have time to make a difference. Certainly I hope I'm wrong.

David, Joyce is in the Philippines.

Agreed but often times it is the family that pushes for treatment. The one thing I would say is if it hasn't spread other than in that area (no lung mets etc...) maybe there is hope. Has the cancer broken through the surface of the skin or is it a lump you can see in the jaw area? This to me would make a difference. The tube should have been there from the outset to keep her hydrated and nourished, then chemo and radiation should have been done after initial surgery. It may take her weeks to put weight back on. During this time the cancer will be growing. Hugs to you. Hopefully she gains enough strength to get through it. Cancer is a wasting disease my friend was 65lbs when she died. she was literally a skeleton with skin. It was horrible. If she is already in this state it will be a LONG battle to get back to normal enough to fight. take care.

In late 2012 they removed a lump in her jaw bone. So her entire right lower jaw is gone. In April the cancer broke through the surface of the skin. 1 as big as a dollar coin and 2 quarter size. They will remove her entire lower Right face from the cheek bone to the jaw bone area. They will get skin from other parts of her body.

What is the difference between breaking the surface of the skin and the lump you can see in the jaw area?

Please explain to me what is going on. They had a conference call with the children and none of the inlaws were invited to come. So I am at a total loss.

Appreciate your input.

Oh Ina! This must be so difficult for you! Im sure you are very worried and with only getting small bits of info you cant put them all together.

What it sounds like to me is that her original mandibulectomy did not get clear margins and the cancer came back. Its only been a few months since her big surgery and its already visible. To me that means they missed some. Thats why usually radiation will follow surgery to ensure it kills all the remaining cancer cells. From what you wrote it sounds like the skin is what will be removed and she will have graphs from other areas of her body. Since chemo alone doesnt kill oral cancer just sometimes it will shrink it, the cancer grew like crazy when the chemo treatments were finished. I hope the upcoming surgery will eliminate all the cancer this time.

Best wishes!

We are waiting for the date when they will insert the PEG Tube. She is so thin and is malnourished. So there is no date for the facial skin surgery. I will keep you guys posted.

The difference is it sounds very advanced if its broken through the skin. Plus this also leaves her open to infection. The surgery you are describing sounds horrendous. Are they still hoping to cure her? If not she is being out through necessary pain and suffering to what end? Admittedly she is probably sick and in pain already - but having them cut her open again just seems unnecessary if its not for a cure. I'm not surprised she's malnourished if she has no jaw and no feeding tube. I do agree the feeding tube is necessary. Hopefully this will buoy her strength. Most people here will tell you that I am an optimist and always push to do what you can but this just sounds so painful, I would be hoping that they are being realistic in terms of being able to heal her. The surgery is a good start but the next step should be rads and chemo... The question is can she handle it. Hugs and best of luck.

Thank you so much for all your help. Appreciate it so much. The doctors said they are CURING her but prolonging her life. Meaning they will do extra ordinary means just to let her survive, a year, 2 years. No promises.

As of last night, they were deciding on when the PEG tube will be inserted. But the doctors warned them that they can not wait to long since the cancer is so aggressive. However, with her condition of being malnourished she can not have surgery.

My father-in-law opposes to the surgery since she stop breathing several times during her last surgery. She was on a ventilator for more than a week.

Truthfully I do not have any say and they won't listen to me. I was even told before not to tell them any information that I get from the forum since they not want to know anything. That part i do not understand. But for each his own!!

Once again, thanks so much.

I really think (purely based upon years on this site) that they need to forget the PEG; forget this surgery and try and make her as comfortable as possible until the end which I believe is very near.

David my in-laws are determined to go all the way no matter how much it cost and regardless of quality of life. For them length of time is more precious than anything. I do not have any say on anything. I am not even allowed to discuss anything we talk about here. So that's how difficult my position is.

But I thank all of you for all your help. I means so much to me.

Certainly I hope I'm wrong.

Is there a difference of Staging if the oral cancer has manifested in the face/skin? Or that would be the same extent as the lower mandible T4? I am not certain is there affected nodes, or if the cancer has spread to other organs. According to my husband there are no other organs affected by means of MRI. But without a PET Scan will the results be accurate?

Truthfully from former members of the forum, the prognosis of her condition is what? A year? 2 years?

I would say less than that. If its broken through the skin it would likely be a high stage. I would find it hard to believe there wasn't more involvement - though I suppose anything is possible - but if she's so malnourished that sounds like a cross between cachexia - and maybe just the inability to eat - if it is cachexia that is the end stage of cancer. Regardless, if she's not eating tha cancer will take her quickly and they can put the peg in minutes its not a major surgery.

Just got an update this morning that the PEG tube will be inserted next week. She would need to be in the hospital for up to 2 days. No surgery will be done. However, they want the radiation to follow once she regains strength.

Ina, Im very sorry to hear everything Joyce is going thru. How I wish her condition was taken more seriously when she first became ill. Nobody can go back and change the past. But I sure wish I had that capability! Im sure it must be very difficult for you getting second hand limited info from other family members who arent always on top of everything.

Hoping for the best!

Let us assume that she is strong enough to endure the radiation treatment. She has titanium implants on her lower right jaw. The 3 lesions are located near the right jaw. Do they need to remove the titanium plate before they perform the radiation? How about her upper jaw and teeth what will be the effect?

Thanks for all your help.

I dont see how the titanium plate could be removed for rads. There could be scatter radiation to the surrounding areas. That is not always a bad thing, it should kill any "straggler" cancer cells.

I know its hard for you being so far away. But it sounds like she has a good treatment plan this time around.

Is a nasal tube a viable option until they can put in the peg tube? I don't know, I am just throwing out this suggestion.

Ina, I am so sorry you are in this predicament. I feel your frustration.

Truthfully Gloria I do not have any say in any of this. I am not part of any conversation. I just get information that they want to share.

There are things that they are not saying.

Last question, if you say Stage 4 T4 and with skin lesions what does that mean? How serious is this condition? Is there truly hope? If there is then go for it!!

Skin lesions is the location where the tumor is showing up. Stage IV is the the last one. There are Stage I, II, III, and IV thats all. Ive seen Stage I patients pass away and Stage IV patients survive. I have been a Stage IV patient as has Brian and davidcpa and we are all here years after being treated.

Joyce does have a chance to beat this. But she is also elderly and not in good shape right now from being malnourished and probably dehydrated. That will make this harder on her. Hopefully the feeding tube will help her to quickly turn around and begin to feel better. At this point, its up to Joyce and her doctors to win this battle. Im a firm believer in positive thinking being helpful to the patient.

Update as of today (May 18)

The Peg Tube will be inserted next week. There will be NO surgery any time soon. Once they see her able to handle radiation and chemotherapy they will start.

According to the children, she is the one that wants all the treatment done. So it is the patient's right to be treated.

The questions is if she can handle the radiation and chemo. There is no way to tell. Based on the last chemo, she had a very difficult time.

Question:
If the tumor or lesion on her face is not removed, will radiation and chemo heal the wounds? Will it increase in size?

The tumor that she has is this fast spreading??

Thanks again

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

I'm not sure Ina, but the doctors must have considered this. Mine were not bad on my face at all, more on my arms, legs, back, scalp, probably from dryness too, and were just itchy. Maybe a day or two for my face. which was immediately cleared by the antibiotics. They can always stop the infusions, if too severe, and just do radiation, maybe restart Erbitux again, Someone can ask the doctor this about this. You, your family are in my thoughts, and prayers.

My husband found that Eucerin's Aquaphor helped a good deal. Best wishes,
Maria

I have been reading some post about radiation and it seems that it is more painful and uncomfortable than chemotherapy. Based on what i heard which I will confirm this week, is that Joyce will get the maximum amount of radiation at the site of her new lesions/tumor. I wonder if the fact that surgery will not performed before radiation would that make the open lesion wound bigger? Was it right not to push for surgery first? Both oncologist and surgeon did not want to proceed with the surgery. What factors could have triggered that decision?

Thanks guys!!

[quote=PaulB]I'm not sure Ina, but the doctors must have considered this. Mine were not bad on my face at all, more on my arms, legs, back, scalp, probably from dryness too, and were just itchy. Maybe a day or two for my face. which was immediately cleared by the antibiotics. They can always stop the infusions, if too severe, and just do radiation, maybe restart Erbitux again, Someone can ask the doctor this about this. You, your family are in my thoughts, and prayers. [/quote]

The main reason they are giving her Erbitux due to her failing kidneys. According to her doctors during her cisplatin chemo her kidneys reached stage 4 (life expectancy), last step towards having a dialysis. Her potassium level is so high that is why it took more than a week to schedule the peg tube. If things don't change she will have the peg inserted on Sunday.

My kidneys are not good either, and main reason why I had Erbitux last time. Nothing else was really considered. Had high potassium just two weeks ago, and in the past, but is normal now. They can bring it down, hopefully. Good luck.

[quote]Both oncologist and surgeon did not want to proceed with the surgery. What factors could have triggered that decision?[/quote]

Hi Ina,

so sorry to hear of the troubles with Joyce. It must be so difficult trying to help from thousands of miles away in addition to trying to navigate a different health care system

To answer your question above: It is likely that the oncologist and surgeon think that the risks of surgery are higher than the potential benefits with Joyce's other medical issues (kidney function and nutrition/weight). Maybe once chemorads are completed and successful, and she regains some health (weight and kidney function) they may consider surgery if they think it necessary??

I personally would not be worried too much about lack of surgery - chemorads might well do everything that can be done.

Everyone is different in the type of treatment, which should be geared towards that person, cormorbitiess, condition, so there is no right or wrong. As mentioned, the kidneys factor in, probably anemic too, and the risk of surgery probably outweighs the benefit. maybe even waiting to see if the tumor shrinks, and then plan to do a less invasive surgery. Radiation may actually help heal some wounds.

Hopefully things will go well for her. Rads and chemo will be hard - very hard - but as it is she is already suffering so hopefully they will give her meds to take care of her pain. Hugs and best of luck to you, her and her family.

[quote=davidcpa]I really think (purely based upon years on this site) that they need to forget the PEG; forget this surgery and try and make her as comfortable as possible until the end which I believe is very near.[/quote]

Update: Peg has been inserted, however, she is fighting an infection of some sort and still at the hospital with fever.

Due to financial issues, the treatment is in limbo. From experience here in the forum, with no treatment what is the prognosis?

Please remember that none of us are doctors much less docs that specialize in oral cancer and add to that that we haven't even seen Joyce so all we can do is post based upon our experiences on this site. In the 6 to 7 years on this site I have read many posts where break throughs have been discussed and in each case the time to end was very short, as in months. I hope I am reading this incorrectly. The fact that her docs, who do specialize in oral cancer and are much more familiar with her and probably have seen others like her, still want to treat her cancer aggressively should give you reason to trust their judgment over my guessings.

Question:

Joyce has the peg but she is very weak. According to a cousin, her voice is so soft, she is extremely weak and can hardly walk. Is that something to expect after inserting the peg?

Secondly if the patient is extremely weak what are the chances of having the chemo and radiation treatments?

Thanks

It doesnt sound like this is from the peg. I think she went for so long without proper nutrition that she is probably dehydrated and malnourished. Ive been that way and was hospitalized a few times for this. You feel so bad that you feel like you are dying, at least thats what I thought was happening.

Tell your relatives she must up her intake to help get her out of this. It can become a viscous cycle. The patient feels awful so they dont bother doing feedings. Because they dont do the feeding they end up having malnutrition and dehydration quickly sets in too. This will further complicate their medical issues and make them feel 10X worse than they already do. The only solution to feeling better is pushing to take in 3000 calories every single day and 60 oz of water daily too. Its alot but it must be that high to pull the patient back into adequate intake. After a few days of this she should begin to feel a little better. But at the same time, she has cancer again so that could be making her feel lousy too. Maybe the pain meds dont work or she isnt telling everyone what her pains are. When someone first gets a feeding tube they could be uncomfortable usually only for about 3 days before they begin to feel a little better. There is alot going on and Joyce needs someone to step up and be her full time caregiver, someone to oversee her medications, feedings, water intake, doctor appointments, basically everything. Wish you could be her advocate!

Could be Cachexia or wasting syndrome from the cancer itself, which is mufti factorial and difficult to treat, and increasing nutrients, even by TPN, may not help. There are some ways they may treat this, maybe not. I heard of using fish oil, omega three fatty acids, corticosteroids, and anabolic steroids, and there may be newer therapies to help reverse this process.

Last Night my husband called Joyce and she was so weak. Her voice was so soft and she said that she is unable to stand up on her own. We told her to call her oncologist to find out what is going on. Her feeding tube is working well but no improvement.

She is still hoping to receive treatment but my husband said if you are that weak then they might administer the radiation and chemo. Besides I am not sure if they figured out how to cover the cost of this second batch of treatment.

Hi there... I am wondering to what end she is being treated. An experienced dr. who deals with cancer KNOWS at what point to stop. From what you have described here she is in the advanced end stages of this disease - and likely palliative at this point - this is based solely on what you have described. If they are still hoping for a cure I would ask what they are basing this on. Has it happened before, and how many times? Likely they probably haven't seen someone come back from this point of if they have there haven't been many. If that is the case then I would ask them what they are trying to accomplish. I am wondering if it is financially based, as in - the continue to get paid as long as they treat. I would wonder if the opposite were true, would they have stopped by now.

Not to say that they shouldn't do whatever they can to fight on her behalf, but at some point the writing is on the wall in big bold letters and continuing to offer hope where it is scant is almost cruel. It sounds almost as if they don't really know what to do, and are just trying anything. This is all reactive not proactive. Ideally the PEG should have been put in long before she was too weak to do much of anything. It almost feels like a lot of too little too late.

The peg is great it will help with the malnourishment, and hydration, but it isn't instant. For her the disease has gotten a strong hold on her because of the long term lack of food and proper fluids and it's aggressiveness. This will not be reversed in a week or two weeks time. There should be some improvement, but will it be enough to get her to the point where she can receive more treatment that's another thing entirely.

I hope for her sake and yours it does. I do believe miracles happen, hopefully it happens for her.

hugs.

I doubt they will do treatments also. It's probably the bodies metabolic changes from cancer, not as much as nutrition. I was in a similar situation at stage 4, couldn't even raise my arm, could not stand, walk for over a year, and pulled through, but it took 6 months in a hospital, and nursing home just good enough to go home against medical advice, but no further treatments (rads) until 1.4 years later. Even after several recurrences, MO refused chemo, RO refused some rads too, even as far as last year, and I was 51. I hope for a miracle.

As of today, Joyce had completed 2 sets of radiation. I am not sure what is the state of her health but according to other son she has completed 2 this week. The chemo due to the high cost is up in the air.

Can a person just have radiation without chemo?

Yes, I had had radiation alone with curative intent, 70Gy to promary, 62Gy to cervical neck, had a clear scan in five months, but returned in the lymphs and at 7 months, then had a RND, 7 months later. Depends on tumor size, treatment goals. Sometimes it's palliative, to reduce Tumor size, and pain, heal wounds, prior to surgery, co-morbities, and as neoadjunct treatment. its 's one step in the right direction,

Good luck.

Chemo helps the radiation work better. Its ok to just have rads without chemo. By itself chemo is normally used for palliative care as it is not curative alone.

Best wishes to Joyce with her treatments.

If they are doing 35 rads my guess (and I am NOT a medical person) it that they think there is at least a chance of cure or longer term remission. Best wishes.
Maria

We are all hoping for the best.

Tomorrow is Joyce first Erbitux chemo treatment.
She had 2 radiation treatments last week.

The plan is 6 Erbitux chemo and 35 radiation treatments.

Please include her in your thoughts and prayers.

Will do... hopefully she will pull through this but it's going to be a long haul if she's in bad shape already... more power to her!!

It is so sad to let you know that the treatments have to wait due to lack of finances. The entire series would cost the family $30,000. Plus whatever is needed after. As of today total spent is close to $50,000 over 4 years (all sent by the children).

Unfortunately we can only do so much and still be able to survive.

Call the local newspapers.

Call your local TV stations.

Call the local health departments.

Call Moffitt, they treat people without insurance.

Call anyone who will listen.

You tell them that she WILL DIE a horrible death without this Tx

Patient is in Philliphines, David. I didn't know in previous posts either. Sorry to hear Ina, I hope your family finds a way.

Ina,
I've been following this post about your MIL and I've been keeping her in my prayers. You are a great DIL and I feel so bad for you and your family being in this situation. I will continue to pray for her.

Yes -Ina is in Florida but her MIL is in the Philippines - sadly - I sense this is why her medical care has been wonky from the get go. And why Ina has been asking for advice - ;o)

If you are in a position where you have to pay for all of your medical care, you need to research what your best odds are for survival and follow that route from the outset. Unfortunately greed plays a big role in the medical establishment and their suggestions.

I am so sorry that finances even have to play a role in her survival though I know for many here it does. Often people put off going to the dr. because they can't afford it etc... (usually until the problem is very serious and needs extensive care)

She doesn't have any medical insurance?

Prayers to you and your family. But based on the description you were giving us a while back the treatment they were trying on her was a last ditch effort and aimed more at lining the drs. pockets, than actually cure her.

Hugs my dear.

Joyce has no medical insurance. They have discounted Senior Citizen cards. The money spent on the surgeries and treatments in the past are all from the children's savings or loans. All are over extended in terms of loans. An additional $30,000 or $10,000 per child is not feasible. Some of our loans from the Mandibular resection and chemo will take 3 years to pay - 2015

We paid for the peg out of our son's savings, which will pay monthly. That alone was $3000, she had complications and had to stay in the hospital for a week - high fever and weakness. It also paid for the 2 radiation treatments last week.

The children were told the likelihood of the cancer returning is high. But the family was willing to do it all just to extend her life. Unfortunately there is no cure and all efforts are for life extension.

I thank all of you for your love and concern. We are one happy family.

Ina,

I am sorry to hear about your situation and being so far away and dealing with foreign international health care systems. Since you basically don't have insurance you could shop internationally for care. Of course there are complexities involved but maybe for others do you have any words of wisdom for those who might be able to obtain quality heath care in other countries?

Good Morning,

We haven't heard from Joyce yet. But so far the treatment has been delayed a week. I don't see it happening the next few weeks. If such is the case how fast does the cancer/tumor on the right side of her face metastasize. What is the probable prognosis or life expectancy that you have witnessed when OC is not treated after 3rd reoccurrence?

At this point, we are just waiting to see if our family back home could fine that amount of money to support her treatment?

Thanks,
Ina

Joyce, Im so sorry you are worrying so much over your MIL. It must be so difficult for you getting second hand info and waiting for updates.

The questions you asked we wouldnt be able to give you any concrete answers. They are specific and so much depends on her condition, how strong she is, the size and extent of the tumor, etc. These are questions that maybe even her her doctor (with seeing the patient and having her full medical history in front of him) would have trouble answering.

I have seen patients make amazing turn arounds when they were terminal and Ive seen other patients who appeared to be doing very well suddenly pass away. This darn disease is so random!

Wishing you and Joyce all the very best with everything!

If the money you are paying is ONLY going to help prolong her life not cure her then stop. my thought is that it would be better spent on good palliative care (pain meds, and things to make her comfortable - maybe some private nursing care if she's at home) - not more treatment that isn't aimed to cure. In the long run this is just going to extend her suffering. Radiation is brutal on even the healthiest person, for someone in her state it's excruciating so you are basically paying for her to live the rest of her days in pain.... I know everyone loves her and wants to do what's best for her re treatment, and the peg is a Good thing to help her get nutrition etc... But more rads?more chemo? To do what ? Help her live another 6 weeks in pain?
I know this is all very hard. Hugs to you.

[quote=Cheryld]If the money you are paying is ONLY going to help prolong her life not cure her then stop. my thought is that it would be better spent on good palliative care (pain meds, and things to make her comfortable - maybe some private nursing care if she's at home) - not more treatment that isn't aimed to cure. In the long run this is just going to extend her suffering. Radiation is brutal on even the healthiest person, for someone in her state it's excruciating so you are basically paying for her to live the rest of her days in pain.... I know everyone loves her and wants to do what's best for her re treatment, and the peg is a Good thing to help her get nutrition etc... But more rads?more chemo? To do what ? Help her live another 6 weeks in pain?
I know this is all very hard. Hugs to you.[/quote]

Update: I was just informed today that the treatment was continued by another sibling. For now the funds send will pay for 4 weeks worth of radiation and 4 sessions of Erbitux. Let us hope that this can help until the rest of the funds come in. Nobody from the inlaws side want to give up.

And yes Cheryl there is no cure. Just prolong.

Glad to hear that. Take one day at a time, Ina.

Almost a month after her radition and Erbitux treatment. I think she is half point. In the event that she gets better can they do additional chemo and radiation on Joyce.

Finances is a major issue. Each treatment is around $3000 combination of chemo and radiation.

Based on the limited information I have given you, do you think this is pallatative or for a cure?

I am very confused on what the doctors are aiming for.

Please keep in mind that I am a CPA not a licensed medical ANYTHING.

Since it's been a month since she was last treated I'm not sure what benefit a future single treatment of either or both chemo/rad would be. The standard or normal radiation regimen for this cancer is appx 72 gys over a daily (except weekends) 6 to 7 week period. Chemo is added either weekly or every 15 days with it's main goal to weaken the targeted cells making them more susceptible to be killed by the radiation. IMO doing the radiation/chemo on an infrequent basis will not achieve the desired kill rate and IMO is not curative and I can't believe it provides much if any palliative benefit.

Treatment options can change when health conditions change wether from being palliative to curative, and vice versa, but is not the typical or ideal situation. My treatments stopped just from 5 days chemo, and was supposed to have 3 cycles of induction chemo, and then 7 weeks Chemoradiation for stage 4 tonsil cancer, and two metatastic lymph nodes, but couln't due to my critical health issues from chemo. While hospitalized, no talk was made for further treatments or even diagnostic tests, for 8 months, only my survival to critical illnesses was a concern. i was left all that time wondering what cancer was doing to my body. I was also in the critical illness nursing home, one a floor where everyone was left for dead. I was only able did radiation 1.2 years later, when I partially recovered, and receieved curative radiation, no chemo, since the doctor said that would kill me, and turned me down two more times for chrmo, so yes, they may be able to do treatment anytime when health improves, if still treatable. Keep in mind, I was 48, and that factors in, as does other comorbidities.

The only thing this treatment will do is line the drs pockets. - as David said rads and chemo should be an uninterrupted 30 - 40 days.of rads (the usual being 33-35 spread over 6-7 weeks with only weekends off) and either weekly or 3 cycles of chemo - beginning middle and end if treatment. What they are doing for her will likely not help at all, the only thing it does is put cash in someone's pockets. Hugs.

Where there is life, there is hope! Never give up! Radiation was not given yet, according to the singnature.

[quote=PaulB]Where there is life, there is hope! Never give up! Radiation was not given yet, according to the singnature. [/quote]

Hello Paul actually she was given radiation, not sure how many. It was supposed to be daily for 4 days. But I was told she had to stop for a week due to the ONE and ONLY machine not working. So I am not sure what week she is on.

Paul she started her recent post with "Almost a month after her radition and Erbitux treatment" so I assumed they already started it and just stopped when they ran out of money. That's what I based my comments on.

No problem, David. Most of my response is my own account, and current thought...fight, fight, fight. I don't think I got over the anger phase with cancer, and like to keep it like that lol.

I am so sorry Ina.
I agree with Cheryl.
Tammy

Ina,
So sorry to hear the ongoing saga with Joyce. It seems even under the best situation she is receiving care if the only rad machine breaks down, assuming for more than a day or so. Then the breaks in treatment really do not help either.

I only hope you may be able to influence the decision to focus on providing the most comfortable daily conditions for her.

I love Paul's fight as it has brought him a long way further along the war with cancer. Most would have seen each new battle with increasing weariness yet his strong will to live kept him marching forward to where he can be the king junkyard dog of OCF! My respects to Charm, I think about that dude everyday too, a warrior of the first order. Long live Charm!

I hope none of ever gets to the point where the battle is lost. I have not a clue if I would lay down my arms and have the last few minutes in as much calm as possible or go down swinging in the heat of battle. God bless none of us ever gets to that milestone in the journey as a cancer survivor.

One of the major factor here is age and advancement he had many recurrences but was able to catch them at a point where it was difficult but still treatable. In both cases Paul has an advantage. Hopefully she does okay but in truth by the sounds of it they've dithered around soo much that her treatment is a disaster in terms of any possible effect. (I mean the medical establishment - not the family) and to me it really does sound like they are simply trying to squeeze more money out of the family. Rads and chemo sounded like a marginally viable option back in the beginning but now they way they are administering it will do little or nothing. Hugs Ina ...

I'm just lucky, and had, have good doctors. My cancer was not found early. It was stage 4 tonsil, T1N2bM0, originally diagnosed with valeculla and BOT also, and so surgery was not recommended, TPF induction chemo, and Chemoradiation was. I only had 5 days IC chemo, and had no further treatment until a year and three months later due to my near deadly chemo reaction, and know, knew, that chemo alone does not kill cancer, it's only temporary, and IC lasts less than a year, if it does, so all that time cancer was left to do what it does, my mind left to wonder, no further cancer scans, and was not expected to survive anyway, never mind the cancer, and was not medically fit anyway for further treatment until I had a recurrence at 8 months, less than a year, a month after my first somewhat clear post treatment scan, and only had radiation then, and MO refused chemo, saying my body would not be able to handle it. Even after 70Gy, bilaterally, I had another recurrence about 5 months later with two nodal involved, which required a MRND, but during surgery, surgeon found everything twitsted, and shrunken from radiation, so he did a RND, taking out the neck muscle, vein, nerve. Luckly he did, because cancer was also found in the removed neck muscle. I also needed alloderm to put on the caroid artery for protection due to the scraping off the twisted, shrunken structures. Chemoradiation was suggested after by the ENT, but my MO, RO refused due them to my health. All fine, but then I had another recurrence in one of the nodes in level V, even with the neck dissection in levels ll-V, which thought odd, but there are 300 lymphs in the HN, most microscopic. The day of surgery, while in pre-op, for my 2nd dissection, a minute before the doctor came in, I found another lump in my neck in level lll. ENT was dumbfounded at first, and decided to remove It along with the other in level V. Turns out neither was a lymph node, and both were metatastic free form or roaming cancer, that could have come from anywhere, plus I had positive margins, lymphovascular and Perneural invasion, meaning cancer may likely spread vis the nerve or vein lines, in additin to the free form or roaming cancer. Further surgery was not going to be given again, chemo was going to be limited to Erbitux only, and radiation was limited only to 50Gy, so I went elsewhere. Lucky I did, cause I had another recurrence a month later, this time in the epidermal layers of the skin. I had another radical neck dissection to remove whatever they can, was left, 15Gy IORT during surgery while the neck was exposed, which is equivelrnt to 3-4 x that of IMRT, a pec flap to protect the carotid artery, which earlier alloderm had to be peeled off first, and also in order to be able to get additional radiation. About 6 weeks later, I had 5 weeks 50Gy IMRT, Erbitux, and Taxotere. Had a clear post treatment scan in Feb, like all before that, but never made it past that mark, so my PET this August is very important, and one I'll gauge matters at, not the three month post treatment scan. This was my condensed version.

That is a frickin amazing story. Honestly, I have tried to understand the entirety and chronology of your journey but you are a tough SOB. If I were you I would be ANGRY AS HELL and REALLY PISSED too. It would be the only to manage to muster the courage and stamina and endurance to keep up the good fight. I can only image the great percentage of those who faced with such grim potential, would have quietly laid down the flag.

If I might ask, of course, your entire life and daily routine is solely focused on surviving the beast but how is QOL other than the shift the focus and time spent on C? How much pain and discomfort do you endure, what has been your narco load over time, how has your mind and body function? I know these all have peaks and valleys but a general sense would be very interesting.

One other thing about recurrence that I am just on the door step of starting to learn about, as that is the next chapter of my battle on C.

You know, I had better start a new thread, this one has really gotten trampled, poor Ina.

Don,

It's not her, she is the Daughter in law to the patient.

Thank you all your response to Joyce's condition. Truthfully the last news I got was from a cousin that visited her last Tuesday. According the cousin, Joyce is in very low spirits and is tired of the treatment routine. She has gained a bit of weight since the insertion of the PEG tube. She said Joyce was complaining about a lot of pain in her face, I am not sure if the pain is due to the effects of radiation or the lesion (which her niece says is an open wound). Despite all of this, Joyce feels she has to continue since her children and the doctors advise her to. As of last week (Friday), she has finished 20 radiation treatments and 4 chemo treatments. She is on her last 3 weeks.

Sounds like Ina has been making good progress. Hopefully she is on pain meds for her discomfort. Thanks for the update!

Let's hope for the best.

Yeah fingers crossed. I'm confused did they stop then start?

Cheryld [quote=Cheryld]Yeah fingers crossed. I'm confused did they stop then start?[/quote]

They stopped a few days in between treatments since the ONE AND ONLY radition machine at the hospital she goes to was not working. But she has continued already. Based on my estimate she should be done in another 2 weeks.