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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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  #1  
Old Sun Sep 9, 2012, 12:18 AM
mausmish mausmish is offline
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Angry Now I have tongue cancer

Last week, on the 21 month anniversary of my successful BMT, I was diagnosed with cancer on the base of my tongue. It was like being hit with a truck! This was so unexpected. I'm feeling great physically and have done so well against the odds with my high risk MDS and subsequent MUD bone marrow transplant. Michael and I are trying to gear up for round two - most likely surgery and radiation. More info on our blog, linked in my signature below.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com

Last edited by mausmish : Tue Sep 25, 2012 at 02:08 AM.
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  #2  
Old Sun Sep 9, 2012, 05:41 AM
Birgitta-A Birgitta-A is offline
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Cancer

Dear Karen,
How terrible that you have got tongue cancer! I do hope that they can treat it successfully!
Kind regards
Birgitta-A
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  #3  
Old Sun Sep 9, 2012, 07:47 PM
Chirley Chirley is offline
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Hi Karen, I'm really sorry to hear that you have another battle on your hands. Winning the war is the long term goal.

I have been doing a little bit of research on Vidaza as I may have had it unnecessarily. There has been a study which associates its use with SCC among other things in laboratory animals. There doesn't appear to be enough data to come to any conclusions about it's carcinogenic effect in humans.

Good luck with your surgery and radiation.

Regards

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #4  
Old Mon Sep 10, 2012, 12:52 AM
cathybee1 cathybee1 is offline
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Karen, so sorry to hear about this. Hit by a truck is right.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #5  
Old Tue Sep 25, 2012, 02:17 AM
mausmish mausmish is offline
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Johns Hopkins has confirmed my diagnosis and will be scheduling me for robotic surgery on my tongue base to be followed in several weeks with the removal of some lymph nodes, the number yet to be determined. This sort of cancer is usually treated with radiation and chemo but they're trying to avoid that due to my history with the bone marrow transplant. Time will tell. I don't have a date yet - they have to find a slot on the schedule where both my surgeon and the robot are available. Although it is technically classified as stage IV due to lymph node involvement on both sides of my neck, the doctors are very optimistic about my prognosis. There was no evidence of cancer in the rest of my body and the primary tumor is small. It's still difficult to believe this is happening. I'm feeling so well. Just like when I was diagnosed with the high risk MDS, I didn't even know I was ill.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #6  
Old Tue Sep 25, 2012, 10:11 AM
Marlene Marlene is offline
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So sorry to hear about this Karen. Do they think this is a secondary cancer from the prior chemo? I know you'll be in good hands at Hopkins. Wishing you only the best.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #7  
Old Tue Sep 25, 2012, 11:30 AM
Sally C Sally C is offline
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Karen,
I too am very sorry to hear this. I wish you well.
God Bless,
Sally
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  #8  
Old Tue Sep 25, 2012, 07:11 PM
milliken2 milliken2 is offline
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Good Luck

Karen;
I wish you much luck with the upcoming surgery, and pray that the Dr.'s and robot's 'eyes' work well together.

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #9  
Old Tue Sep 25, 2012, 09:15 PM
mausmish mausmish is offline
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Thank you all. Marlene, the tumor is HPV+ so they don't think it's related to my prior chemo or other predisposing factors for head and neck cancer such as family history or prior smoking. The HPV+ cancers seem to occur independent of other factors. The good news is that HPV cancers generally respond better to treatment than the HPV- counterparts. I'm learning a whole new vocabulary.

So now I'm part of an elite group who has had not one but two rare cancers. Obviously, I'd rather be ordinary! This, too, shall pass. Right now, the difficult part is the waiting.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #10  
Old Wed Sep 26, 2012, 09:19 AM
Marlene Marlene is offline
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Thanks Karen. I just sent you a private message with a link to a study on your type of cancer. You may have already seen this though. It basically says your type responds really well to radiation treatments.

Good luck.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #11  
Old Tue Oct 9, 2012, 01:11 PM
Lori Patrick Lori Patrick is offline
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I am so sorry Karen. You have a good attitude, which I believe helps the body greatly. Hang in there and I will keep you in my prayers. Lori
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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  #12  
Old Thu Nov 8, 2012, 02:54 PM
mausmish mausmish is offline
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Great news!

There's a longer version in my blog but the brief version is this: my surgeries are done and I'm recovering well. The cancer turned out to be less extensive than believed, limited to the small tumor they removed from the base of my tongue and not in my lymph nodes. I won't be needing chemo or radiation after all! Michael and I are doing a happy dance!
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #13  
Old Thu Nov 8, 2012, 04:14 PM
Marlene Marlene is offline
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Yeah!!!! That is great news.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #14  
Old Fri Nov 9, 2012, 01:24 AM
cathybee1 cathybee1 is offline
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Wonderful, Karen.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #15  
Old Fri Nov 9, 2012, 01:56 PM
Birgitta-A Birgitta-A is offline
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Tongue cancer

Congratulations Karen !
Kind regards
Birgitta-A
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  #16  
Old Fri Nov 9, 2012, 02:03 PM
Neil Cuadra Neil Cuadra is offline
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This is a huge relief, Karen. Congratulations!
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  #17  
Old Fri Nov 9, 2012, 02:06 PM
tytd tytd is offline
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relief

Hello Karen, Have followed your story all along and really appreciate you sharing it with us. So glad to hear that your scare has gone away. Good Luck tytd
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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  #18  
Old Fri Nov 9, 2012, 04:27 PM
mausmish mausmish is offline
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Thank you, everyone! I'll still have regular follow-ups to make sre nothing was missed but it is a huge relief to skip the chemo and radiation. Next month is my 2 year post bmt checkup! Time really flies by.
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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