Sorry there has been too long between my posts but dealing with Don's (my husband) new diagnosis of leukemia has been all consuming.

When we found out about the leukemia we also found out that his tonsil cancer had mets to his lungs & chest. Wednesday they told us that they have to start the radiation on his chest immediately. He will be receiving treatment at Cedars Sinai Hospital in Los Angeles. We live almost close to 100 miles from the hospital and the doctor doesn't think it will be good for Don to take the 2 hr drive back and forth. Does anyone know of somewhere, similar to Ronald McDonald House, we could stay that would not be too expensive. He will need to receive 7 weeks of treatment.

I would also like to know if you are a tonsil cancer survivor did you have a CT scan of your chest during your follow-up exams, after treatment? We asked numerous times if it wasn't necessary and they kept telling us "no" and that if he had mets to the lungs he would have symptoms. He still doesn't have any symptoms...no problems breathing...and the lung oncologist advises that the cancer in the chest & lungs has been there for at least 1 yr. We think that the doctors should have had Don have a chest CT maybe 6 months or 1yr after treatment was finished.

Thanks in advance for all your support and help,

Lorie

Being a tonsil cancer survivor myself this is one of my key concerns - that not enough screening is being done for distant mets. I get an annual MRI (and they begrudgingly give me this) and a chest x-ray. I would like to get an annual PET/CT. The best scan, in terms of image quality, for the lungs is the spiral CT.

My theory is that the head & neck guys & oncologists, for that matter, are in denial that distant mestastesis is a very real possibility for H&N patients. I go round and round with my MO over this issue. It's like they put their blinders on and say "hey we only look for local recurrence". Maybe after they've sued a few times then they'll get the message, unforunately that seems to be what it takes in "bottom line" oriented America. I think in the future I will force them to document the requests in my medical record so that if my estate has to sue them there is a paper trail at least.

Lorie, every hospital with which I am familiar has housing available at a nominal cost for out of town patients. Call the hospital directly and ask. I recently spent a night in a lovely guest house when my husband was undergoing heart surgery and it got to be 2:00 a.m. and I didn't relish the 100 mile drive home. While there, I noticed that the rates were geared to ability to pay. This was owned by the hospital and run by volunteers. I have also noticed that most hospitals also have RV hookups. I am sure you can find something through the hospital. If the front desk doesn't know, ask to speak to a social worker.

Thanks Joanna, yes, my first call was to the hospital and the social worker that has been assigned to us. They did advise that we could park an RV in the parking lot, but my husband says he would not be comfortable.

There is a possibility that a friend will let us use her grandmother's home that is vacant right now. Say a prayer that this works out because it would only cost us utilities.

Gary- I agree and wish we had our questions documented each time, and the oncologist's response. We have contacted an attorney who is interested in the case...maybe if they take it the protocol will change. That's what we want. No one else should have to suffer like Don.

Lorie

Hi Lorie, my experience with the head/neck oncologist is quite different from your husband's and Gary's because I have met a very cautious and caring guy who monitored my situation very closely with various scan tests after treatment especially in the first 2 years. He told me that in view of my advanced stage, I was at a high risk of metestasis to lung and liver, in particular. I had my chest ray and abdomen scanning before and after treatment to ensure that both my lung and liver were clear. In the first year, I had these tests twice a year and then annually. If I complained about coughing, my oncologist would order a chest x-ray for me to ensure everything was fine in my lung. I only had PET/CT scan once in the past 4 years and what I usually had were MRI, ultrasound, chest x-ray and CT scan. Even today, I have to see my oncologist once every 4 months. I guess it will be a bit too late if we wait for the symptoms to emerge.

Karen

Karen-

Thank you for re-assuring me that there are wonderful oncologists out there that take the extra step to make sure to prevent metastasis.
You are 100% correct in saying that it is "too late" if we wait for the symptoms to emerge.

Where did you get your treatment?

Lorie

Hi Lorie,
I got treatment in a comprehensive cancer centre in Prince of Wales Hospital, a major public hospital in Hong Kong which is also linked up with the medical school of Chinese University of HK, one of the very top universities here.
You are welcome to email me if you want to know more about my experience.
Never give up.

Karen

Lorie,
Check with the American Cancer Society. If you don't have a local chapter contact the closest one and explain the situation. My brother was originally treated a couple of hundred miles from home and the ACS paid for most of his hotel bills - They can do a week at a time or something or get a reduced rate, like $30 a night. That really helped a great deal. I hope it all works out.
Tonya

Hello Lori & Don,

I don't have any advice about your housing needs. I just wanted you both to know how much I'm pulling for Don. Lori, You have been such an excellant caregiver over the last 2-1/2 years.
I am sorry you have to fight yet another battle.

Best Wishes, Danny Boy

Hi Lori --

Because of the risk of lung mets, at least at Johns Hopkins they do a PET/CT scan two months after treatment for head/neck cancer which includes the full body down to the hips. This is repeated two months later, and then, at 6 month intervals for two years, then annually. This might change if they see something that needs closer scrutiny; also an MRI or other procedure (including biopsy) would be done if they see any area which appears to be residual or recurrent cancer -- but they might wait a month to see if the area changes (that is, was it inflammation?). When Barry had his first PET/CT scan they found no evidence of cancer but did pick up on some inflammation and scarring in right lung from his post-treatment pneumonia. So they will be checking this also when he has his next scan in March.

I second the advice about contacting the ACS -- they can be very helpful. Just astonished that such a well-known hospital does not have the means to arrange near-by housing for patients.

Gail

Hi Lori,
Similar to some of the others who have posted, my experience is quite the opposite of yours. For stage III/IV patients at the University of Chicago they monitor with a CT of Brain, Head& Neck, Chest , and abdomin every three months for the first two years, then every six months until the five year point. Initially, I was concerned about the amount of radiation that represented, but then came to look forward to the quarterly reassurance they provided.
There doesn't seem to be agreement on this, but it sure would seem prudent to me to monitor for mets in those patients with known initial lymph node involvement.
Could it be an Insurance issue? I know that recently U of C required preapproval on my CT, because BCBS had implemented some controls.
Just a thought. Don't want too take your thread too far off.

You and Don have my best wishes for a positive outcome.

Good Health,

Chuck

Lori,

I have had a PET/Ct every 6 months without even having to ask. It is suggested by my MO not the RO or ENT.

I am sorry to hear you and Don are facing this beast again plus another battle in and of itself. (I can't help with the housing unless you need something more in the Dallas area.) I will certainly grant your prayer request for your friend's vacant grandmother's house to be opened to you and Don and add my prayer that He provide you with comfort and peace during such difficult times.

Ed

Thanks for all your loving words and information regarding follow-up CT/PET scans. I have good news and bad news.

First off, the house in LA that was a possibility has become a reality. We can use it, FREE, for as long as we need it. God does send miracles.

Bad news- when they took a CT of Don's chest this past Monday, to map out where they were going to do radiation, they found another tumor. This tumor grew since Jan. 10th, so the cancer in his lungs is active. Because of the wide area (tumors were all in the upper part of both lungs before this new one) they can not do radition, plus they will not be using a new medication (eribitux). Don will begin chemo on March 1st. Not sure which chemo meds they will be using yet, but it will be for 8 weeks, once a week. At 7 weeks they will do another CT scan to determine if the tumors are smaller. If they are not reduced by 50% then the bone marrow transplant for his leukemia will be cancelled.

Please pray that not only does the chemo work but also that his leukemia stays in remission.

The radiosurgery radiation to his brain was done this past Wednesday and now he is just trying to get past the side effects.

This tonsil cancer is HORRIBLE!

Thanks again for all the love you ALL send our way.

Lorie