Finally, Some Good News!

Hi,

 I had my MRI this afternoon and just got a call from Dr. Gerardi that everything looked fine - no abnormalities.   Whew!

Also - the PET scan has been changed to Saturday at 12:45.  I should be hearing from Dr. Silver about an appointment next week.  

Things are moving.

Love   Mom

Shep Nuland

Just received a call from Mom. She has an appointment tomorrow, Wednesday, November 30, at 1:00 for the MRI and is on the stand-by/cancellation list for this Friday for the PET scan.

This morning I talked to Dr. Sherwin B. Nuland, my friend Drew’s dad, retired general surgeon, and winner of the national book award for “How We Die.”

His take on oncologists are that the top ones in the field all belong to the Northeast Oncologists Society, get together often, and will most likely be using the same or similar protocols.

Since I asked him about oncologists at Yale, he said the top oncologist at Yale is on sick leave and the next in line is Dr. Kenneth Miller (203-737-2167). Miller is full time at Yale and thus probably fairly young (a relative term from the 70+ set). He does not know Dr. Miller personally.

That noted, he recommended Mom see Dr. Sam Bobrow (203-867-5420). Shep knows him well and you can tell him that Shep is a friend and that he suggested you call. Bobrow is an older, more established doctor, who is not full time at Yale but knows what is going on. Of the two doctors he mentioned, he recommended Bobrow for his years of experience.

Regarding clinical trials, he noted the following:

1. They are not hard to find. Patients/subjects are harder to find than clinical trials to join.
2. Most clinical trials are probably not worth participating in since many are testing toxicity and other issues.
3. Your Dr., and certainly Dr. Bobrow, will tell you upfront whether there are any worth participating in that you might benefit from.
4. If you are interested in knowing whether any are appropriate, ask in the initial meeting with your doctor.

Finally he noted that most of the oncologists have relationships with doctors in Florida, since so many patients do winter there. Thus, finding a doctor in Florida to administer a plan developed here should not be a problem.

Joshua

Joshua C. Karlin

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Michael & Sung Yun Weigh In

Cousin Michael and Sung Yun are a pretty busy couple with an awfully cute boy, Samkyu who had a great time playing with Nina and Noah, if not Jonah and Daniel on Sunday. Michael is a surgeon and a biochemist doing some serious research at MIT and in his spare time he travels the world talking about his cancer research, not to mention a few days each month running the ICU at Beth israel Deaconess Hospital. Sung Yun specializes in pediatric bone marrow transplants at Brigham and women's Hospital.

Michael and Sung Yun looked at mom's x-rays and scans. If Dr. Girardi had painted a worst case scenario, Michael and Sun Yin were bringing back some hope. Of course the pictures are only part of the story, and today I called Dr. Girardi to have him fax a copy of the pathology report to Michael. Michael wanted to look at the pathology report to see if there was any sign of infection, something he may have noticed while looking at the scans.

He suggested that it might be a bronchial alveolar instead of adino carcinoma. As of yet, I haven't a clue what the difference is, but we will find out. He suggested that in addition to the MRI and PET scans, tha before treeatment is determined, Mom may need another biopsy.

The key to finding the right doctors will be to find the best medical oncologist. Since the Brigham is the inpatient arm of the Dana Farber Cancer Institute, most doctors at the Farber have appointments at the Brigham as well. He and Sun Yin will find out who the best doctor is.

After a bit, while Michael was still busy looking at the films and talking to Mom, Sung Yun talked to Phil and me about possible treatments and second opinions.

The two factors that can be controlled by the oncologist are:

1. The Drug regimen
2. Access to clinical trials

She noted the importance of getting a second opinion, particulalry since we are dealing with adult oncology. There are jsut so many oncologists out there, it is important to make sure we end up with the right doctor.

Finally we talked about possible treatment centers in Florida. Since Mom will still winter in Del Ray, we are looking into the Cleveland Clinic in Fort Lauderdale and whatever the medical center is in Boca Raton.

And after finally, I just got off the phone with mom. Her PET Scan is scheduled for next Monday, Dec 5 and her MRI the Wednesday after that. She is now going to call Open MRI of Glastonbury and Jefferson XRay in Glastonbury to see if either can do it before then.

Joshua

Diagnosis & First Steps

Mom has had a persistent cough for a couple of months. She went for xrays at Buckland Hills Imaging a few weeks ago and then, on Nov 11, she had a CAT Scan done at the same place. Her pulminary specialist, Dr. Girardi sent her for a bronchoscopy on 11/21 and on Wednesday Nov 23, the day before Thanksgiving, he called her to ask her to come in for the results. She insisted on hearing it over the phone, at which point he told her the tumor was malignant. They scheduled an appointment for the day after the holiday.

Rebecca and I brought her in for the appointment, armed with some questions from WebMD that cousin Henry had emailed. Having three of us there allowed us each to deal with the emotional aspects of the news while still getting as much information as we could. I tried to take detailed notes, as I will continue to try to do, and will share the information here so friends and family can keep up to date with what is going on.

Dr Girardi was guarded in teh information he shared at first, nioting that hwe was not trying to be evasive. Rebecca let him know that whether he was trying to or not, indeed he was being evasive. Part of the issue was that he did not have all the answers, and part of teh issue appeared to be his desire not to hit us with too much bad news at once.

The Dr. noted that we will know much more after an MRI and a PET scan, which will show if and to where the cancer has spread. Both are scheduled during the coming week. Dr. Girardi informed us that Mom's lung cancer was probably an adino carcinoma in a more advanced stage. Given the size and location, he suggested that it was most likely not operable and chemotherapy would be the probable treatment.

He continued by showing us the X-rays and CAT scans. The tumor is 4-5 centimeters (1.5-2 inches) in diameter and is against the left wall of her right lung, pressing up against the bronchial tube. He noted the cancer is probably in stage 3, indicating his still unconfirmed belief that teh cancer has left teh lung and entered the lymph nodes as well.

The compression of the bronchial tube by the tumor is the cause of her cough. Thus, while he gave her some cough medicine, it is clear the only way to alleviate the cough will be to reduce the size of the tumor.

Dr. Girardi noted that the he thought the goal of the chemotherpay would be to shrink the size of the tumor. Given Mom's parkinsons disease, he did not believe that radiaton therapy would be combined with the chemo. He did not believe it could be eliminated. His prescription for now and throughout her treatments is threefold:

1. Eat well
2. Get plenty of rest
3. Be as active as possible.

Although he suggested that it might be better not to go to Florida, and to stay in CT where Phil, Beck, and I can see her more often and provide support, after much discussion Mom decided that going to Florida will probably be the best plan. It will allow her to exercise and to get out when she is able to do so. In Florida she will have the best support system, with Mort far enough away from his buusiness that he won't feel compelled to work, her sister, Sis, living in the same complex, and Mort's niece, Nehama, living nearby. Since Phil and I are working out of our homes, we will be able to spend a week or so at a time in Florida as needed as well.

The current plan is to see an oncologist and get a second opinion in Boston, New Haven, or NY before going to Florida and starting treatment.

So the first step, other than the two tests scheduled for this week, will be to settle on the appropriate oncologist. Dr. Girardi noted that mom's physician usually refers to Dr. Joel Silver.

My doctor friend in NY, Paula, suggested that the main purpose of a consult at Sloan Kettering would be to see if there were any appropriate clinical trials for mom to participate in as well as to review any recommended course of treatment. She noted that Yale would be a much more convenient place, provide the same high standard of care, and that they might possibly be doing the same or similar trials. I have a call in to friend, Dr. Sherwin Nuland, to see who he recommends as the best oncologist in New Haven.

Cousin Michael Yaffe, and his wife Sung Yun are both cancer speicalists in Boston. They happened to be in Farmington, CT visiting Sun Yin's parents for the holiday weekend and were kind enough to stop by Phil's house on Sunday. The next post will detail their comments.

Intro and Purpose of this Blog

On the Day before Thanksgiving, my mom, Jean Lieberman, was diagnosed with lung cancer. The purpose of this Blog will be to keep all the information we have regarding her disease and treatment in one place that is easily accessible and to make sure those of us involved in helping her through this all have the same information. Friends and family might also find it helpful to check in occaissionally to see how things are going for mom.

The nature of a blog is such that a couple of people create posts and anyone may comment. Phil, Rebecca, and I, and if she wants to Mom, will be the posters. We ask others to add any additional information as comments. You may of course add notes and prayers as well and we will ensure that mom gets them in a timely manner.

Joshua