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So sad and lost and overwhelmed
Dad has been home two weeks and it has been a true rollercoaster. He seems so much worse then he did in rehab. He will only stay up and hour or two at the most when therapy is not there. He will work really hard for the therapist and they say how great he is doing, but when they leave it is nothing. At times he seems…
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Another Week: Treatment Goes On
Had yet another of my weekly trips to Seattle Cancer Care Alliance (SCCA), my home away from home. I also had an extra trip of Wednesday for a CT Scan. I saw the medical oncologist, himself, (rather than his PA). I see the medical oncologist about once every three weeks. The report of the CT was not back, but the MO reads…
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Monday is not such a bad day...
That's right, Monday is not such a bad day. I had my 5 week re-visit with the ENT surgeon who performed by second neck dissection in late March and was told that I was healing "fantastically" and that my tongue (site of the primary tumor) and throat were clean, clear and normal in all respects, and she said again "No…
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Bone Disease / cancer due to Radiation
Has anyone had any issues - side effects with their bones as a result of their cancer treatments? I ask as 5 years ago I had radation to my sinus / neck for Esthesionueroblastoma. Over the past 16 months my alkaline phosphatase levels (found in blood tests) are increasing and are in the "High" levels. Over the past 8…
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Jim & I scan results???
Jim & Deb....just checking in on your scan results and see how all is going ...... not that you have to share of course....just letting you know you are being thought of and prayed for.... Tim
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Lidocaine Viscous
Rob is in a severe amount of pain. He is taking only liquid Vicodin and it takes the edge off for about 2 hours. He just does not want to drink because it hurts so bad. This man was in tears today and he doesn't cry, ever. Wondering if anyone has used Lidocaine orally and did it help to numb enough to eat. We will be…
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NJ Shore is awesome another example of wonderful CSN folks
I had a wonderful conversation with Kari tonight. She is an awesome friend and wonderful listener. A wonderful example of the CSN family I have found here. I was very sad this weekend, but in our conversation I found a few moments of laughter I want to thank her for. One thing I wanted everyone to know is that even if you…
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Anxious NPCsurvivor -- turmeric / curcumin ?
Next week I am due for my first MRI after treatment for stage 2 Nasopharyngeal cancer (T2-N0-M0). I had 30 IMRT sessions followed by 3 Cyberknife sessions with concurrent Cisplatin (3 doses) which ended on July 1 2009. I didn't receive any adjuvant chemo. Recently, I have started becoming anxious that cancer has returned…
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Still here..
Hi all, I am still reading as many posts as possible, but during work hours.. you all know the drill. We have been super busy trying to get our kitchen finished, pool open, now we mow weekly.. and getting ready for surgery next Friday, but wanted you to know I think about you all every day, and can't wait til next week, I…
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simple pleasures and smiles
Hello everyone ! We've had a few hard knocks on site but also alot of very good outcomes. I was on the site accoi....and alot of folks there are fighting hard to beat back this dx. We've lost a strong warrior there also. Prayers are very welcomed for fellow warriors. Words just don't seem like enough....my heart breaks for…
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A New Contraption Has Been Added Into The Mix
I think I'm learning way more about medicine than I ever wanted to know. Not really. Some of it is scary, but interesting. Hubby's Nephrologist was called in because the Lasix is not doing a good job of removing fluid. In order to deter further kidney damage, a central line was put in hubby's neck that connects to a…
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Doing well
Hi to all, I thought it would be nice to share some good news. I'm almost 6 months post rad and doing well. Saw three of my doctors in the past week or so, and they are all happy with my progress. My ability to taste is much better. It still fades while eating, but it should only get better in time. I'm getting used to my…
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3 weeks
It has been three weeks since David died. I had one big melt down today. I was completing paperwork for an upcoming doctor appointment and they asked for my emergency contact. OMG I didn't have one. I called David's mom in tears and she told me to put her down. This is really a rough ride. Thanks to all my CSN friends for…
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Ringing the Bell and other things.
Hi Folks, A BIG THANK YOU to ellamenno, Joe, P and Helen for asking about what's going on as well as a BIG THANK YOU to EVERYONE for your encouragement and support. Today I rang the bell! 6 chemos and 30 radiation treatments officially ended at approximately 8:35am Wednesday April 24th, 2013. Here's a pic of Marcia and I…
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How's Letumwork doing?
Just thinking about you. Hope you're doing well. Halfway? We are still right behind you. Helen
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Just to say HEY
I just wanted to jump in here and say hey to all my CSN family. I know I have not posted in a while and feel bad when I think back to all the folks that responded to my post. Please be aware I read most every post and pray daily for all of you. Im so glad to know that some of the regulars are still offering their advice…
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Cisplatin Overdose
"Phew" feel like I have just been through a washing machine and the dryer. Just over 2 weeks ago I had the first dose of Cisplatin followed by wearing a pump (with Cisplatin) for 5 days, the doc thought I was strong enough. I was supposed to have something to boost my white blood cells as well which was forgotten, that put…
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Things are progressing
Well folks been some happenings around here in the last week or so. The big item is that I had my G-Tube and Port removed. More of a psychological than physical change. It just felt so damn good to have my body back to where it was before all this started, although much thinner and almost no muscle. It's almost hard to…
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Kent Cass...Clean PET/CT
Just wanted to post a quick bit of news.... Kent sent me an email... He just had a PET/CT and is still clean, kicking and pushing forward.... BELIEVE, John
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Sensitive to Cold Drinks
Hi all, Rob just finished Rad #10 and he has lost all taste. A little fast we thought but everyone is different. He is complaining of a sore spot on side of tongue although radiation is tonsil, I am sure this is normal also Is sensitivity to cold drinks a problem? He has never really been sensitive to hot of cold foods and…
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Scan Today, Results Next Week
Hubby got his scan today. ENT said significant thickening and hardness in his neck on both sides, moreso on the left. Palpation and visual good but he said he didn't want to tell us not to worry about the rapid change in his neck without a CT scan. He said possible it is result of radiation but did not want to take any…
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I Feel Like A Really Bad Soap Opera
Hubby's stay at home was a very short one. Our son had styed until about 8, & I had to call him back at 10 to move his dad to the commode. He is absolute dead weight & our son could barely do it. I had noticed a considerable swelling throughout his whole body when I brought him home, but he wanted home so badly. When he…
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Surgery and neck dissection complete, 36 rads to start in 3 wks
Hi all, its me "first IDC now SCC. Well I had my surgery on my lower lip and chin with neck dissection on Wed for the oral SCC. I will have 36 rad treatments when I am healed, the rad onc said in about three wks. When he was explaining the head and neck mold and mask fitting I thought my husband was going to pass out.... I…
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NED after 4 years!
I got the word yesterday that my recent CT scan showed NED! It's been a very long and rough ride, but those of you who are in the "Battle zone" right now should know that this is a winnable fight for a large majority of HNC patients and their caregivers. The new-normal of cancer survival is well worth the fight. While I…
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Treatment and Pets....
When Marcia and I went to the chemo class, one of the things brought up was pets. With a cat, they said we could interact, play, pet, cuddle etc., no problem. They also said not to allow them to sleep in the bed with us. Socrates sleeps with Marcia and occasionally will sleep at my feet. As I sit here typing with the boy…
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Need some encouragement
Hello all! I am new to this, so I am not really sure what to do. I am beyond thankful to have found this site. Just reading all of the posts give me great comfort. So yesterday my dad went to the hospital to get a golf ball size lump on his neck checked out. The results of a biopsy came back to be SCC. It is still very…
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State of 420 in California
As I am fortunate to live in the Golden state of California where everything grows like crazy and crazy things grow too, I decided to post an official 420 post on my experience even in the hippy state. My goal is to use all tools to battle cancer including MJ. I am not a user nor have been but there is clear evidence in…
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Newly diagnosed
I was just diagnosed today with T1 SNUC. Had surgery on January 31, 2013 to remove nasal obstruction. What should I do next? My doctor is very unfamiliar with this and he is actually researching information also. Any help would be appreciated! My doctor thinks I will need 6 weeks of photon radiation 5 days a week.
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Steroid Side Effects
I wanted to share what happened this week concerning what has been determined as a side effect from steroids. I was given three drugs to help control nausea from the chemo. Ondansetron, Dexamethason and Prochlorper (breakthrough nausea). Dexamethason and Prochlorper are steroids. I was also given Emend during infusion with…
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Help with dentures
Hello everyone. my mother just finished her chemo and radiation for throat cancer. She had to have the rest of her teeth removed before they would start the treatments. Now she needs help paying for the dentures. She has medicare but they do not pay for anything. Does anyone know of places that might help her out? thanks…