#96072 05-25-2009 11:25 AM | Joined: May 2009 Posts: 5 Member | OP  Member
Joined: May 2009 Posts: 5 | I am a new user. I am the wife of a 30yr survivor of squamous cell Ca of the base of the tongue with cervical node involvement. He is status post R radical neck dissection followed by radiation all done in 1979 when he was 33. He is now almost 63 years old. . He had done well and is still cancer free. He has now been ill with recurrent aspiration pneumonia as a result of dysphagia since Dec 2008. He has had 3 hospitalizations since then and had to have a left lower lobectomy due to pus in his lung. He is no longer able to swallow or expectorate any mucous. He currently is getting gastrostomy feedings,has a tracheostomy for pulomary toileting is Oxygen dependent and is very decondtioned. Prior to December he was active, ,working and eating a regular diet. I am his primary care giver and have left my job as an RN case manager to be home with him. I am very frustrated because prior to the beginning of December he was doing so well. He is being seen by a speech therapist and is doing swallowing exercises. I would like to hear from anyone with a similar experience or from anyone with suggestions on how we can restore his health. I know we should be happy that he had 30 good years and that he is still cancer free but he was in such good health until now. If his ability to swallow was improved I believe he would be able to recover.
Mary U | | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Mary
I wish I had answers for you but I need to learn how to swallow myself again and haven't yet. Still it sounds like you are doing all the right things and more. I can only imagine how frustrating it is for you as a caregiver to deal with this, especially having made the sacrifice of your job,
While I can't help with your husband's problems, let me suggest that you post a thread in the forum: Introduce Yourself. You could ask the caregivers here their coping tricks. We have a sympathetic group of caregivers here who could provide you some words of comfort. Nobody but another caregiver of a patient with serious impediments can truly understand what you are going through. I do know that it is vitally important that you take care of yourself first in order to care for him. Introducing yourself is the best way to start getting some support from those who have been there. So sorry you had to join this forum
Finally THANK you for posting a 30 year survival story,
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Hi, Mary. So sorry for this new round of health issues. I don't know anything about this current situation but must tell you, reading about 30 cancer free years will lift a lot of spirits around here (mine included). I don't know how different tx is between 1979 and now (I'm guessing a lot) but if he could do that, he can handle just about anything. Sincerely hope all goes well.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: May 2009 Posts: 5 Member | | OP Member
Joined: May 2009 Posts: 5 | Thanks for repsonding to me. How do you psot a thread? I am a new user and my experiemce with being on line has only been work related using progrmas relating to my job. Any help you cna give me would be appreciated
thanks
Mary U
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Mary,
Start by going to the Introduce Yourself forum and click on it.
Then click on New Topic in the upper left hand corner and type your Subject and then your Post.
I thought you already started this Post?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2009 Posts: 5 Member | | OP Member
Joined: May 2009 Posts: 5 | I did do that. I just did not know what a thread was. I am wondering if there are any other survivors out there who are cancer free and having long term effects from the treatment. if anyone has any suggestions on how to prevent the recurrent aspiration please forward them. We are also havinf problems with excessive mucous from his trach. We were able to initially cap the trach for 12 hours at a time but now can only cap it for short periods due to the the thick mucous he is coughing up thru it.
Mary | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | A Thread is a new question (from you). Once you have a new question, then search the list of Forums to see where the question fits and start the new thread by posting the new question.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Mary,
Where are you in NJ? Where is he being treated? Why did he suddenly develop dysphagia? What are they doing to treat it? We are surrounded by CCC centers. They are probably better equipped with more experience in solving problems caused by aspiration pneumonia. If you are not already at one, I would seek a second opinion.
Meanwhile, are you using a humidifier or nebulizer to help with the mucous. I used to use a long handled Qtip to catch the mucous coming out of the trach and then rotate it to lift out the string in one piece. Start a new thread in INTRODUCE YOURSELF with your intial post here and add the details of where and how he is being treated.
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
| | | | | Joined: May 2009 Posts: 5 Member | | OP Member
Joined: May 2009 Posts: 5 | He is being treated by our PCP and was seen by an ENT, Pulmonologist, Thoracic surgeon and Infectious disease docs when he was hospitalized at our local facility. I worked with his PCP so I call him whenever I have questions or a problem, His original surgery. radiation and followup was at Sloan Kettering. I did contact the original surgeon who is still practicing. He is now the department head. He gave me the name of someone to see when John is up to making an office visit. He is improving but still not up to making the trip into Manhatten. He is using a humidified O2 and is on nebs every 6 hours. I will try to remove the mucous with the Q tips as you suggest. Currently I have been changing the inner cannula from the trach, cleaning it and then replacing it. I am trying not to suction him if he can cough it out.
I did neglect to mention that besides the recent lobectomy he also had 2 other thoracotomies with wedge rections of the right lung for benign tumors from the radiation so I am sure that both of his lungs are compromised. Reguarding the dyspahgia, the docs felt it was a long term effect from the radiation and also from muscle deterioration from his poor nutrition. They are hoping that with the PEG feedings and speech therapy he may be able to swallow. He has gained 10lbs in 6 weeks, Another problem he had was that all last summer he was having a lot of trouble with his remaining teeth. His dentist finally had decided to pull them but he got sick before it could be done. His lab values when he was first admitted in December showed he was malnourished
I guess the best advise we can give anyone is that no matter how long you have been cancer free make sure to continue follow up visits with the speicalists. We stopped going into NY in 1999(20 years out) and just saw his PCP for check ups. We regret this but can't go back. Our goal now is to get him back to New York as soon as we can
Thanks for listening.
Mary | | |
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