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new to this board mets to lungs

jim and i's picture
jim and i
Posts: 1622
Joined: May 2011

Hi, my name is Debbie. My husband Jim waas diagnosed May 2011 with stage 4 base of tongue with mets to 2 lymph nodes. January of this year pronounced lymph and tongue clear but nodule in upper right lobe. Waited 3 months for a CT and the result was numerous nodes in both lungs. He can't handle chemo, the csplatin almost killed him. Next Monday he has another CT but we do not get the results unti,l the following Monday. My question is: anyone experience this fast growing of nodules? The pathologist could not deternmine if the cancer was mets from tongue or new cancer so they are assuminfg from tongue. I am afraid that sincee it went from one to numerous in 3 months that this is fast growing and multiplying which means short time. He has also started to lose weight again. Please help with any info you have.

dennycee
Posts: 666
Joined: Mar 2011

So sorry for the circumstances that bring you here. I would strongly recommend that you get a second opinion as quickly as possible. It should be with a oncologist who specializes in lung cancer. Do you know if they were testing the sample for mutations? There are several targeted therapy drugs that might work if he is EGFR, ALK or other mutation.

When your husband had difficulties did they switch his chemo med to the milder carboplatin or another chemo drug? Did they perform a biopsy on the nodules? If not, insist that they do.

Please keep us updated.

jim and i's picture
jim and i
Posts: 1622
Joined: May 2011

dennycee, thanks for the reply. I don't know about the test for mutation, I will ask. When the cisplatin affected him badly they gave him erbetux which made him sick but not as bad as the cisplatin. The oncologist said he could try more erbitux but he did not think it would do much to help. Getting my husband to agree to more chemo of any kind is a problem because he was hospitalized twice the last time. Yes, they did biopsy the nodules. They could not determine if it was from the tongue but are assuming it is.Debbie

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Sorry to see you here, Debbie. I have written a bit of my story to pass along, hoping that it will give you some hope:

I am a head/neck cancer (dx August 05) and lung cancer (dx June 07) and am now NED (No Evidence of Disease). For the h/n cancer I had a sizeable portion of my tongue replaced along with a nerve transplant and a radical neck dissection, followed by 33 of 35 scheduled radiation session and several rounds of chemotherapy (cisplatin). Once the steroid wore off (I was like the Tasmanian Devil in terms of energy for about 24 hours following each chemo treatment) I was lying-on-the-bed-in-a-fetal-position-in-the-dark-with-thum-inserted-in-mouth-and-bucket-beside-bed sick for a couple of days. I met with ENT regularly and with OncoMan every 3 months following either a CT scan, a PET scan, or both. Eventually this was extended to six months and then ENT man, after five years said "You know where to find me if you need me" and we were done, with some occasional visits for dilations.

I asked GP in June of 07 why I still had this nagging little cough since I had quite smoking two years prior. He immediately ordered xrays and CT scan. Now, I was seeing GP because of an infection in facial area (cellulitis?), and had begun taking an antibiotic. In any event, the reports back were not good. I've written of this extensively on my CSN profile and blog, but the bottom line is OncoMan said I had as little as 10 months to live. There were nodes throughout both lungs, all lobes. Palliative care, chemotherapy to try to prolong quality life was the one option. Then in August, following another CT to observe growth, it was discovered that all of the nodes but one were gone! Turns out the Keflex I took for cellulitis apparently also took out the lung infection that the docs had misread as cancer based on my previous history.

They put me on a CT scanner to try to get a needle to the nodule for a biopsy, trying a number of awkward positions, but my ribs were not cooperative and it was on to a wedge via VATS surgery (video assisted, less invasive). The deal was, if it was the same kind of cancer (squamous cell carcinoma) and proved to be metastasis, they would not remove the lobe, since they could not know where else it might have gone. But if it was new, they would remove the lobe (lower right). They did the biopsy while I was still under and determined it was SCC, but not whether it was mets, and so elected to remove the lobe.

Following a bout with MSSA (a relative of the staph infection MRSA), I was sent home with a man purse (24/7 picc line meds for the MSSA for a month) and regular rounds of chemotherapy to 'slay the strays'...carboplatin and taxol, nowhere as insufferable as the cisplatin, a walk in the park, in fact, by comparison.

Longer answer than you wanted, but I am NED, still.

Best wishes.

Take care,

Joe

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