#27885 12-31-2005 07:32 AM | Joined: Aug 2003 Posts: 71 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Aug 2003 Posts: 71 | Hi All- I'm sorry it has been a very long time since I posted anything. Lots going on since Don (my husband) was diagnosed with tonsil cancer in August 2003. We celebrated his 2 yrs cancer free on Oct 21, 2005 and he was feeling GREAT, except for what had been diagnosed as bronchitis & a sinus infection.
After the antibiotics didn't work and he was feeling rundown and worse 3 weeks later I took him to E.R. We demanded a chest xray...Thank God! It came back "suspicious" so they did a CT scan and took blood. Long story short he has metastasis to both lungs with numerous nodes and they found that he now has Acute Myleogenous Leukemia (AML).
Needless to say our lives have been turned upside down. I took him to E.R. on Nov 6, 2005 and he wasn't released from the hospital till Dec 23, 2005. The first chemo round for the AML did not work because they discovered that the AML was a result of the treatment for his original tonsil cancer. I demanded he be moved to Cedars-Sinai Hospital in Los Angeles and I thank God for that too. It appears at this point that the 2nd round of chemo put his AML into remission. We found out this past Wednesday that his brother is a perfect bone marrow match. The doctor is hoping that the transplant cures the AML.
The metastasis to the lungs is separate from the AML so they had to treat the AML first. At this point the cancer in the lungs is at a stand-still, which is a good thing. After the AML is treated they will treat the lungs. We have a loooong way to go.
Just wanted to know if anyone else has had this experience, especially the AML ? I could use all the comments, suggestions, and emotional support any of you can give.
Don's spirits go up and down. He is home for now, waiting for insurance approval for the transplant. His mouth sores were bad again from this chemo...especially since they had to do the 2nd round before he had a chance to heal from the first. His body is "beat up". I feel helpless.
Thanks for listening and always being here.
Lorie
Lorie/wife of Don, DX:8-7-03, Tonsil cancer left side stage III, IMRT x 35, 6 chemo (Cisplatin/Taxol), clear CT Scan 12-26-2003. Mets to both lungs & AML 11-6-05, mets to brain Jan 2006, mets to liver & bones April 2006, passed away July 20, 2006.
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#27886 12-31-2005 09:43 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | Hopefully 2006 will be better for you than the latter part of 2005.
God bless you
Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#27887 12-31-2005 12:39 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Lorie,
I am so sorry to hear of Don's new problems. I have no experience with this and can only offer words of encouragement. Please stop by the forum often for any support we can give the two of you.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#27888 01-01-2006 11:02 AM | Joined: Jul 2005 Posts: 150 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jul 2005 Posts: 150 | I am so sorry to hear this news.
Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
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#27889 01-01-2006 02:25 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Lori, I am thinking of you and Don and hoping things get better in 2006. Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#27890 01-01-2006 04:24 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Lorie and Don, Sending you both prayers, strenght and hope for 2006. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#27891 01-03-2006 10:49 AM | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Lorie and Don, my thoughts and prayers are with you. So sorry to hear this news. I live near you, Southern California, and if I can be of any help, please let me know. Just send me a private email.
Hugs,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
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#27892 01-03-2006 04:06 PM | Joined: Aug 2003 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2003 Posts: 71 | Thanks so much for all your words of encouragement and prayers...they ALL work!
Don is getting weaker and weaker, and more and more depressed just sitting waiting for the insurance to approve the bone marrow transplant. He is also worried that the tonsil cancer that moved to his lungs is getting worse (though the xrays & CT scans of his chest show it is not growing). I try to encourage him but I know these are normal feelings when the cancer is still there and all you are doing is sitting at home waiting...it is always much easier to be "fighting" with the chemo, etc.
Please continue the prayers and please let anyone you know who may have had a similar experience to contact me via this website.
Hope 2006 is a great year for all of you. Lorie
Lorie/wife of Don, DX:8-7-03, Tonsil cancer left side stage III, IMRT x 35, 6 chemo (Cisplatin/Taxol), clear CT Scan 12-26-2003. Mets to both lungs & AML 11-6-05, mets to brain Jan 2006, mets to liver & bones April 2006, passed away July 20, 2006.
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#27893 01-03-2006 09:42 PM | Joined: Jan 2005 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2005 Posts: 156 | lorie and don,so sorry to hear this news my prayers and thoughts are with you at this very trying time. keep your chin up GOD IS GOOD ...MAZ XX HOPE 2006 WILL BE A BETTER YEAR. | | |
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