Our visit to Indiana University....

Good Morning Everyone,

Boy we had a long day yesterday....... At this time, Chelsea was not accepted into the research program, which was related to her still not being fully recovered from her pneumonia and her disease being considered stable according to the Cat Scans... Seems like there are strict guidelines to get into any research program.... You almost have to be 100% healthy and your disease has to show progression with use of standard chemo therapies....

I wonder is there anyone who is really considered "Healthy" that has been diagnosed with Cancer??? And just because your disease is stable, why does that not qualify you for the program??? You STILL have cancer...

The oncologist we saw was Dr. Jalal....we really liked her and she wants us to come back next month to be re-evaluated. She also talked about Chelsea being the youngest one diagnosed with SCLC that she is aware of or even read about... She said there has to be a reason (not being related to an extensive smoking history) that she would of developed this at such a young age... She wants to send Chelsea's biopsies to a Genetics lab to be tested for what she thinks could be one of 2 different gene mutations... if there isn't enough biopsy for the test, Chelsea may have to have another liver or lung biopsy. Which we think is worth it given her age of only "21" ! We agree we should be aggressive as possible... If this is a gene mutation, she told us THERE are specific treatments other than the chemo that she is receiving that could benefit Chelsea :o) This is very HOPEFUL and ENCOURAGING NEWS!!!! Of course you wonder why Dr. Jalal is the only oncologist so far that has mentioned this possibility and you have to ask yourself...why didn't the other doctors suggest it??? I think it ALL does matter on which doctor you see.....
I pray she is on the right track!!! She said the Topetecan (even though not shrinking the cancer) is still being effective at keeping a lid on things for now.

Her recommendation was first get Chelsea recovered from the pneumonia, then once stronger one more dose of Topetecan. Then a follow up Cat Scan and come back to be re-evaluated for the study, which will have more openings in December going into phase II of the study. They will hold her a spot at that time to enter the study...

One other thing I will mention that might help someone else, is Dr. Jalal said was that Amrubicin is the MOST effective chemo that is known and proven to be 70% effective for SCLC !!! It is currently being used in Japan and already approved as a treatment. They have been fighting to get it here in the United States for awhile now and it is approved now here for research and is in phase I of the study. The are very excited about this new chemo!!

I did ask Dr. Jalal about the kerotyping (sp) with cancer that I keep hearing about as well as others mentioning to us to have it done.... She said it is where they take the biopsies and test it with ALL chemos, even if it is not a chemo used for that specific type of cancer and if they find a chemo that is effective that is what they give you to see if it helps shrink the cancer... She thinks it is still too early in testing at this point, but didn't make it sound like it is totally not worth looking into at some point down the road.

Dr. Jalal told Chelsea, anytime she wanted to call her personally and talk or even come see her to be examined that we were more than welcomed to!! She seems like a very compassionate and caring doctor...

So all in all, the visit was a productive one!! Atleast she is willing to look into other options for Chelsea and that is very POSITIVE!!!

Sorry this was long, but wanted to update everyone on how things went yesterday. I hope some of this information might be passed along and help someone else out...

There is ALWAYS hope and other options to investigate... So keep searching and asking about other options, even if they seem to be a far reach!!!

Continued love and prayers for all....

(((HUGS)))
Brenda and Chelsea <3

By CKP
Posted November 5, 2009 at 10:21 am
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This is great news! Except for not being healthy enough for the study it sounds like a very positive visit.

Thanks for sharing!

Hugs,
Cindy

By Jessica815
Posted November 5, 2009 at 8:25 pm
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I hope Chelsea continues to get better quickly so she can participate in the program. That was positive news! Wish everyone could have an awesome doctor like that. Reading that all made my heart feel so much lighter tonight! Thanks for the tip on Amrubicin- I will do my research. Best wishes to Chelsea!

Jessica

By Mar24
Posted November 5, 2009 at 9:03 pm
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Sounds like the trip was very productive and you meet with a great doctor with compassion. May Chelsea continue to get better and be able to participate in the program. God bless her.
Maribeth

By gesmommy
Posted November 5, 2009 at 9:33 pm
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Sorry that she didn't get into the trial yet, I will pray that continues to get better and that she will be healthy enough to participate soon.
That is wonderful news to hear about your meeting with this caring doctor! Sounds like she is really on the ball. About the testing with the mutations, I believe that is a such a great thing-its personalized cancer care, since we are all individuals and all of our cancers are different. I just don't know why more doctors don't test for it.
Although I don't have SCLC but I can speak from experience with the testing for mutation/treatment options. I had my first scans today after starting treatment since have the testing and I've had significant shrinkage and we also know that if this medicine stops working, which chemo to try next. It is always great to keep your options open and to have a doctor who is willing to think outside of the box. Chelsea and your family continue to be in my thoughts and prayers.

By kq182
Posted November 6, 2009 at 1:45 am
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Hi, so glad that you have finally found a compastionate doctor for your daughter. Now we have to pray for her to get her strength back so that she can participate in one of the Trial studies. This is very encouraging, and I am so thankful and will be praying real hard that she is able to be treated soon with this new doctor and their new studies.
My love to Chelsea, Karen

By Chi-Dreamer
Posted November 6, 2009 at 9:40 am
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Brenda,
Thanks for keeping us updated. This Dr sounds very compassionate, too bad Chelsea didn't qualify for the trial. Hopefully they will find something else that will benefit her.

God Bless You Both

Linda

By ksep
Posted November 6, 2009 at 7:50 pm
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Hi,

I wanted to share my experience with IU Med Center with you. This is non cancer related. I had an unusual abdominal tumor that nobody around here wanted to deal with. Finally a wonderful Dr here said "you have to get some help" and personally called me to give me an appt in 2 days at IU Med Center. The Dr was one of the nicest men I had ever met and led me to a neurosurgeon that was just as compassionate as the first one and he successfully operated on me in May of '08. My husband was then diagnosed in Aug of the same year with LC. (not a good year). Anyway I have found everyone there to be very down to earth and compassionate. Also I was freaking out over the bill, I still had some left from my surgery and then had a followup MRI in April '09. Granted compared to what other people have in medical it wasn't that much but it was for us because my husband lost his job with the LC. They are part of Clarion health and when I called to ask for help on the balance they wrote it all off! I don't know your circumstances but wanted you aware that they are not for profit and must write so much off to stay that way. I got prompt followup in the mail confirming I had 0 balance. It is a drive for us as well (3 hrs) but I'm lucky my brother lives there. I would definitely go back if needed and if god forbid anything comes up with Phil maybe we will check there given the experience you had. Anyway wanted you to know! I'm praying for Chelsea to regain her strength and go into the study. I can tell you are much relieved! Kathy

By caden
Posted November 7, 2009 at 8:30 am
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Thanks for the update. I think about you both often. May this be the beginning of something wonderful for Chelsea!
Hugs and prayers~
Cathy

By MomElise
Posted November 7, 2009 at 3:39 pm
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I am a patient of Dr. Nasser Hanna's at IU and I cannot say enough good about this man and the program there. I was immediately upon diagnosis biopsied and tested for gene mutations, tested positive for efgr, and had a 75% improvement in lung tumor resolution after only 4 weeks on Tarceva. Before the initial test results were back, I was started on chemo and radiation (brain) before we arrived at Tarceva due to the test result. I am symptom-free, and will have my brain mri next month to see if there was any resolution after my radiation treatment (I'm stage 4, adeno). They are so caring, provide nutrition consultation, support groups. Dr. Nasser encourages us to call and email (he emails back within the half-day). The first day I met him I had been concerned about transferring records and films, and he literally said, "Don't worry about that. This is my concern. I will take care of all of it." He has been a man of his word.

By Diba
Posted November 9, 2009 at 1:14 pm
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Dear Brenda and Chelsea
I am so happy you found Dr. Jalal. It sounds like things could finally turn that corner we all know is there for you. I really hope she gets into the December trial.

Stay strong and I hope Chelsea recovers quickly from the pneumonia.

Hugs
Lynn

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