Newly Diagnosed Stage 4 Squamous Cell Carcinoma - 1248011

kmelinda
Posts:3

My fiance, Dean, was diagnosed with squamous cell carcinoma the beginning of June. We are very confused and hurt because he was put at stage 4 because of pleural effusion. I'm confused because the fluid is less then 1cm and does not show any malignant activity on a PET, and the lung cancer is nowhere else. The tumor is located in his left lung where the bronchial enters in it. So, left mainstem, and it's mostly blocking the airway entrance to the lung. The lower lobe has partially collapsed, and he's battling a lot of mucous from the little air movement. The dr is just wanting to do pallative care. But, after reading some testimonies on lungetivity.com and much prayer, we don't want to give in yet. He's only 43 years old. Also, at first, they were going to remove the whole lung, but pulmonary function was not good enough.

Now, you should also know that this lung cancer is a secondary cancer for Dean. He has been battling Hodgkin's lymphoma for the past 5 years. It had been being kept stable in his pelvis area with an oral trial drug until this evil happened too.

Anyways... I know he's a complex case, but we woould appreciate any and all ideals and information to receive the best possible care. He has currently started Gemzar [2 weeks on and 1 week off] to try and contain both cancers. We have been told to have his tumor tested for CD30 by 2 top lymphoma oncologists [a wonderful new drug was FDA approved for Hodge this year, and they think it's worth tested Dean's tumor block for it, but the lung oncologist says there is no need of it.

Thank you in advance.

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JimC
Posts: 2753

Hi kmelinda,

I'm sorry to hear of your fiance's diagnosis. Usually the presence of a pleural effusion in conjunction with lung cancer indicates that the fluid is cancerous, and that would make it Stage 4. It is not uncommon to get a false negative when the fluid is tested. You can read about malignant pleural effusions here: http://cancergrace.org/lung/2007/03/17/intro-to-pleural-effusions/

As far as treatment options, the complicating factor is the need to treat both his lung cancer and lymphoma. Gemzar is a drug commonly used to treat lung cancer, and it has shown some promise in treating recurrent Hodgkins lymphoma (for example, see this abstract: http://www.ncbi.nlm.nih.gov/pubmed/18452104) The lung oncologist's reluctance to test for CD30 is probably because the drug which may be effective for Hodgkins may not be effective for lung cancer.

I will forward your question to one of the GRACE faculty; you should expect a response by tomorrow. In the meantime, if you haven't already done so it is a good idea to subscribe to this topic so that you will know when it is updated.

JimC
Forum moderator

Dr West
Posts: 4735

As Jim indicated, the pleural fluid in the setting of lung cancer is usually the product of the cancer, and in that case it would be stage IV...and not curable. Pleural effusions generally don't light up on PET scans, since you need a high density of cancer cells in a small area to show up on PET, and a few cancer cells suspended in pleural fluid don't have that density.

We couldn't say whether the treatment for him is the best choice or not. As you indicated, the Hodgkins disease is a complicating factor that may well impact his ability to safely tolerate the more common lung cancer chemo regimens. I think it would potentially be helpful for you to seek a second opinion, perhaps to provide new ideas or, at the very least, to provide a clearer explanation and corroboration that the treatment he's getting makes good sense.

Good luck.

-Dr. West

certain spring
Posts: 762

Hallo, kmelinda. I wanted to join Jim in saying how very sorry I am to hear that your fiance is having to deal with this on top of everything he has already been through.
I have a tumour in what sounds like approximately the same position as his, blocking the airway as you describe. It was, and is, very frightening, but has been controlled at different times with local treatments such as radiation to shrink the tumour, a stent to hold it back from blocking the airway, and regular bronchoscopies to clear out and "debulk" the tumour. I really hope the gemzar works well for your fiance. As to the CD30, my experience with mutation testing is that it is worth having any extra information that might help inform your decisions, assuming such a test can be done without risk or pain. Very best.
PS - This link might be helpful, given Dr West's suggestion about a second opinion:
http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…

kmelinda
Posts: 3

Certain Spring - May I ask what facility or physician you use? As of yesterday, Dean has been released from his lung cancer specialist for hospice. He just tried Gemzar on Dean and refused to continue trying anything else, even genetic testing, after Dean had growth. We begged for different drug combinations, but he refused us. I believe Dean's life can be extended. We've just got tp hurry up and find the right drug or drug combo. By the way, my email is kmelinda@bellsouth.net if you don't mind to help me.

certain spring
Posts: 762

I'm really sorry but I can't be any help as I am not in the US.
This must be very difficult for you and your fiance, particularly given his age and his history. Did you consider getting a second opinion as Dr West suggested? From what you say it sounds as if the immediate priority is the lung tumor and the resulting breathing problems. I hope your fiance is not in too much discomfort with his breathing.

kmelinda
Posts: 3

Oh, it sounds like you've got a good one that fights with you. I am currently waiting on a phone call confirming his appointment with Nashville, TN's, Vanderbilt-Ingram Cancer Hospital for a secoond opinion. I've been having a difficult time getting him in an out of state hospital because of insurance barriers.