The Continuation
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The Head and Neck Cancer site is a labor of love. Cancer first reared it's head (just the tip of the iceberg, so to speak) in January of 2001 when Michael, my husband, noticed a lump on the left side of his neck. Here is a chronicle of our "adventures".

Winter 2001 - The Beginning
Spring 2001 - The Discovery
Summer 2001 - The Surgery
Fall 2001 - The Radiation
Winter 2002 - The New Beginning
Spring/Summer 2002 - The First Anniversary
Fall 2003/Winter 2004 - The Continuation
Spring/Summer 2004 - The Highs & The Lows
Fall 2004 - The End  11/30/04

I have put off updating the site because I hated to post some news that could be considered bad by some. We have had a wonderful three years since our journey started but we did hit a speed bump this past fall.

Mike's progress has been followed closely first by his ENT surgeon at Roswell Park Cancer Institute, Buffalo, NY and then by doctors in Florida where we relocated in Spring of 2002. All tests continued to be negative (CT scans, PET scans) until Fall of 2003. We were told that one lymph node on the non-surgical side had grown from 1cm to 1.5 cm in the previous 3 months. A PET scan was scheduled as well as a ultrasound-guided fine needle aspiration biopsy.

The PET scan showed a hot spot in the neck and the lungs....the FNA confirmed it, two lymph nodes came back as positive for squamous cell carcinoma. Our worst fear was a reality, the cancer had returned. One tumor was next to the carotid artery. Due to that and the earlier radiation treatment, it was deemed inoperable and incurable. The best we could hope for was tumor shrinkage and some additional time. The treatment recommended was radiation combined with chemotherapy.

We visited two radiation oncologists and two medical oncologists. The end result was deciding to go ahead with a fairly aggressive treatment plan of Intensity-Modulated Radiation Therapy (IMRT) and chemotherapy (Cisplatin). IMRT was started on 1/2/2004, scheduled 5 days a week for a total of 30 treatments. Chemo was started on 1/3/2004 and was scheduled for a minimum of 3 once a week treatments with additional courses to be decided on a weekly basis.

Side effects of the radiation would be pretty much the same as before with the exception of saliva reduction, the hope being that would not change drastically due to the targeted radiation. Chemo treatment would have many of the same side effects as well as some unique ones. In addition the chemo would enhance the effectiveness of the radiation (chemo has no curative properties against SCC) and would thus enhance the side effects.

During treatment the worst side effects were:

  • taste changes (even water tasted bad thanks to the chemo)
  • trouble swallowing/throat swelling (used the newly "installed" feeding tube before the first week of radiation was completed)
  • mucositis (one of the dual side effects)
  • fatigue (another dual side effect)
  • skin irritation
  • neck muscle spasms
Radiation ended up being 25 treatments along with 4 chemo treatments. The radiation oncologist "recalculated" and decided to stop at 25. Once those were done, Mike was signed up for 20 Hyperbaric Oxygen (HBO)  treatments to help promote healing, reduce side effects and help prevent the future occurrence of osteoradionecrosis. These treatments took just under two hours, including preparation, and brought their own side effects. Again, the strongest one was fatigue followed by increased metabolism.  >> more info on HBO & osteoradionecrosis

Now we get to sit and wait for tests - due to the inflammation & healing process, no tests will be done until late April. At that time Mike will get CT scans done. The PET scans will be done the first week in July. In the meantime we continue to savor each day to its fullest and enjoy living where we can "ride every day".

 

NEXT:  Spring/Summer 2004 - The HIGHS and the lows 


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