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#192639 06-25-2016 02:12 PM
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Kokomo Offline OP
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I am caregiver to my husband who was recently diagnosed with combined
small cell/squamous cell tongue cancer. Stage 4a. He had a neck dissection where they removed a tumor and 34 lymph nodes. 2 were cancerous. The primary is at the base of his tongue. He just finished 35 radiation treatments plus 4 cycles (3days each) of Cisplatin plus Etoposide. No feeding tube so we have been very lucky. Unfortunately, this is his 3rd primary cancer. He also has prostate and clear cell renal cancer. Both are NED at this time.
I'm would like to,know if there are any other members with small cell neck cancer.
Thank you,
Kokomo

Kokomo #192640 06-25-2016 05:47 PM
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Welcome to OCF! Im very sorry to read about your husband having 3 different cancer rounds and tumors in 4 places. There arent many here who have had more than one primary tumor at a time. Its pretty rare to have more than one tumor independent of the original tumor at the time of diagnosis. I know there are a few members who have had this.

When I was first diagnosed with SCC, my first tumor was located inside my left cheek and the second tumor was behind the top left molar. They were 2 completely seperate tumors located about 2-3" apart. One was mildly differentiated while the other was was well differentiated. After 9 years I cant remember which was which.

I can think of many who have had SCC located in their tongue. Even thinking back over the years Ive been here I cant think of any members who had a tumor in their neck and were diagnosed with small cell cancer. Im sure there must have been some but Im sorry, I just cant think of anyone off the top of my head.

Since your husband just finished his radiation treatments, he probably is feeling pretty lousy. Do the best you can with getting him to take in at least 2500 calories and 48-64 oz of water every day. Check with the doc to see if adding high protein whey powder to his diet would help him speed up his healing. Recovery for OC can be a long road. With the sense of taste, mouth and throat areas affected it really makes it difficult to take in enough. Not that any cancer is easy, but OC comes with a whole new set of nasty side effects.

As a caregiver, you have a difficult job. Dont forget to take time to catch your breath once in a while. Even just a walk around the block can bring a different more positive outlook.

Best wishes with your husbands recovery.


PS... Ive replied to your private message. Click on the tiny flashing envelope next to your My Stuff tab to get the private message (PM).


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Kokomo #192641 06-26-2016 11:18 AM
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Hi Kokomo, I'm sorry that your husband has had so many battles to fight.

This is a really rare and unusual differentiation of oral cancer that I don't think in 16 years we have seen here before. Since you are using the word throat cancer to describe it, a term which isn't the proper definition of it, I hope you will confirm with your doctors that this is indeed a small cell squamous cell carcinoma, and not the typical and very common squamous cell carcinoma that we see on the base of the tongue. The reason that I as you this, is that the two are very different in their response to treatments, and I do not wish to give you misinformation.

Even in the literature, this type of cancer is historically found not on the base of the tongue (although there are isolated reports of it in the oropharynx), but in the larynx, and even there it is only .5% of all laryngeal diagnosis. It is commonly associated with lung cancers, and when not in the lung it is only 3-5% of all small cell lung cancers in the body that are not lung based.

Your post doesn't say where you are being seen, nor what kind of work up he had for this, but I hope that it included scans of his lungs to confirm this is not an extension of something from there, and also p16 staining to confirm that this is not a typical HPV16 origin base of tongue cancer.

While we are discussing something that has unique issues retailed to it, I would like to add that small cell cancers (particularly lung) are in the group that is responding well the the new immunotherapy drugs called immune check point inhibitors. While there are many of these coming on the market, the two with current approvals for use are Opdivo (nivolumab) from BMS, and Keytruda (pembrolizumab)‎ from Merck. They both require some hefty insurance as they are expensive at this point in time, but perhaps they are worth of adding to his treatment tools.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Kokomo Offline OP
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I am trying to find out if there are others here in this forum with this combination cancer. My husband is the patient. I did a search and it came back saying 200 posts but I don't know how to find. I know I need to complete a signature line but if there are no others with this combination I may need to try and find another forum. I just don't know what to do. Please help.

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Ive sent you a PM (private message).

Our site is the largest online group for OC. Every single day on our website, there are many thousands of hits from all over the world. Over a month it totals many million times our site has been accessed by people looking for info about OC or also called head and neck cancer. That totals significantly more traffic than all the other groups for OC combined.

Please read the reply by Brian Hill. He is our most knowledgeable person about unusual, rare conditions and also anything/everything to do with oral cancer. Brian is the only non-medical professional to sit on many high profile groups where he learns a great deal more than anyone else on our site.

I would much rather try to connect you with Brian than another patient who is probably in the same boat... trying to get info thats next to impossible to find. I suggest you try sending Brian an email or a PM. Provide all the basic info about your husband and include the things he asked in the above post.

Best wishes!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jun 2007
Posts: 595
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Hi, Listen to Brian and the others here at OCF, Brian has the knowledge and rescoures to give you the straight answers and proper guidance you will need to help him thru this.. Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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Kokomo Offline OP
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Christine,
Thank you so much for the info and you are right - OC has its own set of unique side effects.
I will email Brian with all the info I have from my husband's pathology report. Unfortunately, he indeed has small cell combined squamous cell found at the base of his tongue. Since it is primarily found in the lungs, his treatment has been what is consistent with lung cancer. He is being treated at Johns Hopkins in Baltimore, Md.



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Kokomo Offline OP
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Thank you Bob. I will work with Brian. Maybe there is someone else out there with a similar diagnosis.

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Kokomo Offline OP
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Hi Brian,
Thank you for reaching out to me. My husband is 69 years old. He is being treated at Johns Hopkins in Baltimore, Md. The info I am giving you is directly from his surgical pathology report from 02/2016.
Interpretation and diagnosis:
Left tonsillar mass - combined small cell carcinoma and squamous cell carcinoma, HPV related at the base of his tongue. Both tumor components are positive for high risk HPV by RNA in situ hybridization.
34 lymph nodes were taken from various neck levels. All were clear with the exception of level 2 where the combination cancer was found.
Neck dissection removed the tumor and lymph nodes but the lesion at the base of tongue was not removed. His treatment consisted of 35 radiation treatments over 7 weeks concurrent with 4 cycles of chemotherapy of Cisplatin and Etoposide
Given 3 days on and 21 days off.

Tests confirmed this cancer is not related to my husband's prostate cancer or clear cell renal cancer.
It is indeed a third primary cancer.
My husband has Ct scans of his chest, abdomen, and pelvis every 4 months to check on the kidney cancer. He had his left kidney and adrenal gland ( enlarged but no sign of cancer) removed in March, 2015. No far with no other treatment, he is NED. Prostate cancer was also contained. Had radiation plus brachytherapy
plus hormone therapy. So far no spread and no further treatment.
He has also had a brain scan 1 month ago due to speech problems when he was hospitalized at Hopkins with neutropenia for 10 days. Scan showed nothing brain related. Speech problem cleared when fevers were resolved. He is scheduled for a PET/CT in August to see how well the treatments worked.
The Drs at Hopkins tell me that while this is very rare they have had the results double checked with experts at Hopkins and the pathology results are accurate. The treatment has been the most aggressive they have. In their words they have pushed my husband to the edge of the cliff without " pushing him off the cliff".
It has been hard to say the least. I was hoping to find someone else with a similar diagnosis but I am realizing my husband is in a class by himself. I can say he is healing extremely well thanks to the support of his medical team.

Please let me know if you need additional info. I really don't know of nor can I find any info of trials or centers that specialize in this kind of cancer.

Sincerely,
Kokomo


Kokomo #192710 07-12-2016 05:48 AM
Joined: Jul 2012
Posts: 3,267
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Not sure if this is helpful or applicable at this point, but here is an article regarding HPV related small cell carcinoma of the oropharynx at John Hopkins with 5 cases.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3193931/

Good luck


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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