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PEG
Well I guess I bitched enough about the last PEG I got (they went from a 24french to a 20 french and that was not good for blended food)last month I believe that someone nust have heard me. At 2:00 this am I got up to relieve my bladder and my peg just fell out. I went back to sleep and actually enjoyed the sensation of…
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Metastasis To Lung
Repeat CT: Stuff in lungs grew. Oncologist suggests a biopsy. I'll go along with that suggestion (with much "normal" trepidation.) Lung metastasis has such a poor prognosis. I have so much to do and so little time to do it. I'll fill you in as time goes by. The only thing remaining is to leave my caregiver (wife) in the…
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p.e.p scan not always right
Just a short story of what great thing that can happen to you when you have faith.I did not have much faith a few weeks ago when the E.N.T said "Your P.E.P scan showed a hot spot" What do you say, when the doc. say's "You need a M.R.I this week and I have a surgon from Loma Linda who is going to take your case" Ya know I…
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Mask Fitting Today
Well, I must say that for me, the build up was way worse than reality. I'm a bit claustrophobic so I was expecting a really bad event with a Freddy Kruger style hockey mask that was so restrictive I was going to need something a lot stronger than Adavan to keep me on the table. What really happened was they put this damp…
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what a day
Today David had the new PICC line installed and it bled since 9:30 this morning. They gave him two platelet transfusions and it just isn't clotting well. Then the gave him a antibodies infusion (his body isn't producing enough). He had a reaction of fever and severe rigors. We finally got past that though. He is set to…
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RIGHT SHOULDER PAIN
Hi everyone. I have yet another question. I had a right neck dissection back in May and was just wondering if pain in the neck and shoulder area was common. More of my shoulder than my neck. Is there anything I can do to relieve the pain besides pills or do I just need to suck it up and hope it goes away? P.S. I love this…
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surgery soon
What a day ! 3 hr. wait for thorasic guy...several people left due to schedual being pushed back so far. We of coarse stayed as it is 165 mile ride to get to them. I have a 3 cm. spot in my right lung lower lobe. They will be doing VATS to remove it, won't know of coarse if it is mets or another primary til after path is…
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Lower cost nutritional supplements
It has frustrated me no end to be taken advantage of by the retail sales industry as I shop for liquid dietary supplements. The mark-up is huge, and since I am still partly dependent on liquid supplements nine months post radiation, and will continue to be so in the forseeable future, I have continued to shop for lower…
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chemo rads to start
The plan is to start Cisplatin (sp?) 12/18 and do a dry run of radiation....then we start on our 35 rads daily routine. After so much waiting and diagnosing, it feel like it is moving so fast and there is not enough time to gather or prepare what we need. But the sooner we start, the sooner we finish. So here we go. I am…
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PORT OUT TODAY!!
I had my port removed today. It feels kind of good to have that last little object removed from the treatment side. Makes me feel kind of "normal" again. Was glad I got to do it before the end of the year, already had max out of pocket met.
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Post Treatment Issue
My 85 year old father is 3 months 33 radiation and 7 chemo therapy treatments for epiglottis cancer. Although he says he 'feels good' and is eating (some) and drinking without problems, he does say he has a lump in his throat. Says he tries clearing it, and doesn't inhibit his swallowing, but still feels like it is there.…
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Why cant we just be normal
I am seeing all the people I started this journey with ringing the bell and I am extremely happy you have made it this far, but I also find myself upset that nothing along this journey has been normal for us. It is like we got on the wrong bus. From the very beginning you stood by me as I lamented about all our delays and…
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Wish me luck...and send prayers....
I have my first PET scan tomorrow morning at 9:00. I can't believe how nervous I am...out and out scared to be honest about it. The what if's started attacking Sat morning when I read about Larry Hageman...how stupid of me, I know...but that sent me on a bummer weekend. I'm better now, but still so so nervous. p
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Group Cyber Hug
I have not posted much lately but have been keeping up with each of you as some continue their journey and others just start it. I am behind on responding to the many posts and I apologize. I need to pay forward the wonderful support we got here during hubby's tonsil cancer treatment. Some of you have good news, others new…
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Advice for neck burn
My husband completed 30 radiation treatments to right neck on this past Wednesday. Was doing pretty good but last two days his neck has become blistered, dark red and extremely painful. I knew this was going to happen but just feel so awful for him. I know some of you veterans on the site have experience with this. We are…
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Tx is complete today....time to heal..
Hi Folks, Well...today is his last day of treatment! We are on the road to recovery after today. We were told the tongue, mouth, and neck will take about 3-4 weeks to heal. They will slowly start to wein him off his meds. Still keeping the feeding tube in for about 3 months. They are confident that he will be able to start…
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Cancer Has Returned
It has been quite some time since I have posted or been on this website. I have received much good advice and shared with others suffering head and neck cancer issues in the past on here. I was diagnosed in December of 2006 with pharyngeal cancer. I had a neck dissection and thirty five radiation treatments and chemo once…
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Thorasic specialist today
Hello everyone, Well I think I'm all ready for this appointment today. Took my own advice that I continually pass along on writing everything down. (reinforced by a good person on board here also) I put it into words for my new doctor so they understand where I'm coming from and where I intend to go on my coarse of…
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ball is rolling
Things are moving so quickly now. Last night David ran a 101.1 fever and we had a lot of activity in the room. Blood cultures, urine samples, chest xray. Then this morning we woke up to you need another blood transfusion. He is having that now. At 1 he has the bone marrow biopsy and starts the seven chemo drug regimen…
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First transfusion today
The nurse came in early this morning and told us David would probably have a transfusion today. His platelets are now 12 and his hemoglobin is 6.9. I have heard this should.do a lot for him. It also appears his system is becoming very acidic. I don't know what they will do about that. I am really hoping we still get to…
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What happens if treatment declined?
Hello, I'm writing about my 94 year old dad. SCC floor of mouth 2001. Surgical resection. NED until 1 year ago. Surgical resection 2nd time this past Jan. Cancer is back. Had CT/PET/ and met w/ H&N surgeon and rad oncologist. (Dad has COPD and is not a good candidate for more surgery AND he is leaning towards no radiation…
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TEP Speech
Okay; I'm posting this as new because there are so many postings on this I just can't wade through all of them. Paul (my boyfriend, recently used to be fiance) had a total laryngectomy in August of this year. That would be just over three months ago. He is doing really well...lots of energy, has his appetite back for the…
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Year Since Total Laryngectomy
Sunday November 18, is one year since my vocal cords were removed (a total laryngectomy). I thought I will mark the anniversary by posting some of the things I learned during the year. The operation and my week-long stay in the ICU was virtually pain free. I think a laryngectomy is harder on the caregiver than the patient.…
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granulation tissue at the G tube stoma
The stoma where the G tube is inserted started to develop granulation tissue a while ago, but this issue became significant just a few days ago. The tissue is forming now at a higher pace, it’s about the size of a pea and it’s very friable (bleeds easily). The reason for this is the increased friction, as the tube moves in…
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Scatterbrained
Hi everyone. I haven't been on for a while, I hope you all had a wonderful Thanksgiving. I have a question that I have been afraid to ask because I'm afraid nobody else has experienced this and then I'll know for sure that I'm just crazy. I finished radiation in September of 2011 of left side of head and neck. I had my…
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I want good news
David has primary plasma cell leukemia. Over 40% of his white blood cells are cancerous. He is very anemic. The doctor said they bone in his hip has been significantly impacted. They are keeping him seven days and are starting a seven chemo drug regimen in the morning. No more treatment for head and neck. The doctor said…
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Must be the season for gift's
Last week I found out the beast is back at my door stop, it's not as bad as the first time but its there.Had B.O.T and lung cancer at stage four.Rad/chemo one year and two months has passed with clean P.E.P scans and now the scan shows activity on anterior tongue at 2cm and a value of 2.6.Yesterday M.R.I have not got…
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PET /CT versus Regular CT of H&N
Well I finally got the call a lot of you may have, after 3 PET/CT scans , the next was scheduled for Monday the 3rd, my insurance has deemed that thePET is not medically necessary for me, they will pay for a H&N CT only, and will only approve one of those every 4 months versus the PET/CT I was getting every 3. While my…
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Tomorrow we ring the bell
Well, tomorrow we ring the bell. We met with the oncologist today and the last Cisplatin was cancelled due to hearing issues and tinnitus. He received 2 out of 3 doses and if he received a third treatment it would be a decreased dose and dr explained that the decreased dose has not been shown to make much difference. He…
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back in the hospital
David has been having frequent nausea again and started vomiting tonight. We came to the ER they said he was pretty dehydrated. His creatinine level is up again. They have decided to admit him. Hopefully this will be a short stay.