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Medical Forum / Diseases and Disorders / Cancer / March 2006Post-Treatment notes
Dear group, I want to brief my story: I have Nasopharyngeal Carcinoma. Diagnosing of it took record long time for various reasons - From middle of June 2005 to middle of October 2005! Treatment started on November 28 2005. The last day of radiation therapy was February 6, 2006. Overall, I've got 40 RT - 72Gu and 3 round cisplatinum based chemo - On November 30, January 5 and February 2. I had serious complications in the mid of my treatment and spent 9 days in the Hospital. Main things were - severe tooth infection, high fever, thrushes, mucosities and not having food for12 days and loosing weight. Due to intensive and great care at the Hospital, the infected tooth was successfully extracted, then got inserted G-Tube. Overall, my treatment had to be stopped for 15 days and restarted on January 3. After leaving out hospital I've got very up in my spirit, that I passed a serious complication, that I was surrounded with great compassionate and professional people. Notwithstanding all things around, surrounding health and social issues, that spirit and positive attitude helped to pass the treatment. Currently I have 100% feeding by tube; mucosities and thrush - come and go; same with nausea and vomiting; pains; deteriorated hearing; lost 20lb; dry mouth et.c. But the main thing that really makes me worry, is the last MRI: A week before the end of RT my doctor ordered MRI on the last day of RT; He explained it that as I lost 2 weeks in the middle of the treatment, he would like to be sure if I need a couple more RT. I've got call by the nurse on February 8, that there is no need to get more therapy and I can get my copy of the MRI at front desk of the clinic. What I read there - that my tumor shrinked from 41mm to 26 mm. ( I am posting the MRI report just after this post in case some knowledgeable prof. would like to comment on it). But what I get (let God make me mistaken) that the treatment didn't help, as I still have the cancer. What can I tell? Great thanks to the hospital and the doctors, nurses, the great team who worked on me and the people who surrounded me in newsgroups and in life. ...I wish I am mistaken. I wish I still can be cured some day. Regards, Araik Margarian. http://journals.aol.com/aramargar1/MyAmericanDream/ Radiology Information System Run Date 02/09/06 Desc: MRI Nasopharinx W WO Contrast 70453. IMPRESSION: Marked Interval decreases in size of both the primary right nasopharyngeal carcinoma and metastastic nodes of Rouviere and right level II and III Jugular chain posterior cervical space nodes as detailed above. fc, 02/06/06 Report Indication: Nasopharyngeal Carcinoma, s/p radiotherapy. Technique: MRI nasopharynx, with intravenous contrast. This study was limited secondary to patient motion and hemoptysis during the scan. Comparison: MRI nasopharynx dated 11/10/2005. IV contrast: 12 cc Gadolinium administered without complication. MRI, Nasopharynx: Post treatment findings are noted s/p radiotherapy of the right nasopharyngeal carcinoma. There has been marked interval reduction in size of the right nasopharyngeal carcinoma. Heterogeneous signal and enhancement involves the right foramen lacerum, the external face of the hypoglossal canal, and that appears to scallop slightly the inferolateral aspect of the right basiocciput, measures approximately 26AP X 13 TV X 23 SI mm, representing a marked interval decrease in size compared to measurements made today from the 11/10/2005 study of 41 AP X 26 TV X 35 SI mm. The lesion abuts but exerts less mass effect along the distal cervical segment of the right internal carotid artery. There is no significant compromise in flow within the right ICA. These measurements reflect interval decrease in size of both the primary right nasopharingeal carcinoma and the adjacent metastatic right node of Rouviere. There has been marked interval decrease in size of metastatic right level IIA, IIB, and III jugular chain and posterior cervical space adenopathy. A single treated right level IIB node (image 81, series 4) that lies just medial to the right sternocleidomastoid muscle and posterior to the posterior belly of the right digastric muscle has persists, but has markedly decreased in size since 11/10/2005. No new metastatic appearing nodes are seen. The left metastatic appearing node of Rouviere has as well nearly completely resolved. Moderate right round signal abnormality within the right maxxilary antrum is redemonstrated consistent with a retention cist, unchanged. Bilateral moderate likely inflammatory signal abnormality is noted within the mastoid air cells, slightely increased since the prior study. Left nasal septal deviation and spur redemonstrated.  SignatureRegards, Araik Margarian. http://journals.aol.com/aramargar1/MyAmericanDream/ > Dear group, > [quoted text clipped - 42 lines] > > ...I wish I am mistaken. I wish I still can be cured some day. > Radiology Information System > [quoted text clipped - 113 lines] > ----= East and West-Coast Server Farms - Total Privacy via Encryption > =---- See my previous reply > ...I wish I am mistaken. I wish I still can be cured some day. If I were you, I wouldn't give up the fight until a few other doctors said there was no further treatment that would help. You'll be in my prayers. How are you feeling? SignatureAll relevant people are pertinent. All rude people are impertinent. Therefore, no rude people are relevant. -- Solomon W. Golomb > > ...I wish I am mistaken. I wish I still can be cured some day. > > If I were you, I wouldn't give up the fight until a few other doctors said > there was no further treatment that would help. Isn't it a little early to draw conclusions? He had the MRI the day of the last RT treatment. J >> > ...I wish I am mistaken. I wish I still can be cured some day. >> [quoted text clipped - 3 lines] > Isn't it a little early to draw conclusions? He had the MRI the day of the > last RT treatment. I suppose that's true. I'm interpolating from my own experience, which was that the cancer was gone on the very first scan. But nothing's to say that his won't shrivel (at least to my knowledge). SignatureAll relevant people are pertinent. All rude people are impertinent. Therefore, no rude people are relevant. -- Solomon W. Golomb > Dear group, > [quoted text clipped - 42 lines] > > ...I wish I am mistaken. I wish I still can be cured some day. Araik, most H&N cancers do not disappear by the end of treatment. It will be 2-3 months before you can start to get an idea of how well treatment has gone.... Dear friends, I want to update my story after 4 weeks of silence. So, after getting troubling MRI just the last Radiation day on February 6, I met to the doctor and asked about explanations on around February 22. Seeing the MRI report he was surprised as he said he got other info about same MRI which say that ... the tumor area is almost invisible. I don't blame doctors or hospital. I already expressed my great gratitude and trust to them previously. Just it became a tradition for me some amount of absurdity to follow in almost everything in my life. He took back the report I had and asked for another MRI to be scheduled at front desk where they said they will call me after checking my insurance. To this date - March 12 - I haven't heard from them. Meanwhile, I have side effects - some of them sound like "symptoms" that I should have had before biopsy and treatment that I actually didn't have: Rings in the ears; substantial loss of hearing; almost permanent congestion in the nose, specially right side of the nose where there was tumor at July scan. That makes me to breath exclusively by mouth which creates more severe dry mouth and mucosities. Still has food exclusively by G-Tube; Though nausea problems are gone for most of the part, the vomiting, specially "dry" vomiting ( I would feel as electrified with all stomach and throat and make severe "vomiting" by involuntary movements without actually vomiting something.) Couldn't have drink a sip by mouth; Constant nasty phlegm; Needle in the throat; Coughing with mucus and blood and rosy phlegm, and some strange things all the time; With pain. Specially right low parts in the neck have some pain and I can feel (a doctor felt too at last time) some nodes. Special weakness in right arm muscles and other places too; Overall tiredness and very weak. Several blood statistics still low. The doctors have dismissed Pet-scan at all I don't know why. Last time they say that MRI will be than in a month or so. They say you are in good shape, just start to swallow. I am thankful to all responses I got on my Feb.22 post. I apologize I couldn't answer them on time as mainly I was not in mood to concentrate and write. Above was all the life I live in last 1-2 months. Not counting special social issues most frustrating of which is battle from state to state for fair and just decision of court about ... child support adjustment. But I would like to ask to them who walked through the similar side effects and to specialists about following most nasty issues: 1. How to fight against nose congestion? I tried an inhalation tool; eucalyptus oil dropping into it's hot water; Lavender's creme or eucalyptus massage oil put into nostrils: With no impressive results. 2. How to fight against mucositites and phlegm? If I cough all the time, cough very hard and spit out these disgusting and pain causing liquid/firm/bloody things from my throat and the base of tongue, isn't it dangerous itself to make more damage to mouth and throat? What else can be done? Doctors hinted that throat is not in the best condition and hinted biopsy. 3. Having done with all of these, dry mouth should be nothing more than annoying: Rinse mouth periodically, drink water; Currently I also use some biotene mouth wash and oral balance which are not bad. 4. Doctor's insist to start sip or drink some water/liquid a day; but I couldn't: to much pain and cough most of the time. But they say that the overall healing is connected to that - if you can use again your throat to swallow until it didn't became useless. So, any comments or advised? SignatureRegards and best wishes to you all, Araik Margarian http://journals.aol.com/aramargar1/MyAmericanDream/ > Dear group, > [quoted text clipped - 46 lines] > Araik Margarian. > http://journals.aol.com/aramargar1/MyAmericanDream/ > Last time they say that MRI will be than in a month or so. That's fine. On Feb 22, Steph posted to you, to give it 2 -3 months. ("before you can start to get an idea of how well treatment has gone.... " > They say you are in good shape, just start to swallow. > > 1. How to fight against nose congestion? > I tried an inhalation tool; eucalyptus oil dropping into it's hot water; > Lavender's creme or eucalyptus massage oil put into nostrils: > With no impressive results. Vicks inhaler ? (it's the size of a lipstick tube) and for sleep, dab some vicks (ointment) on tip of the nose (outside the nose) ? > 2. How to fight against mucositites and phlegm? If I cough all the time, > cough very hard and spit out these disgusting and pain causing [quoted text clipped - 12 lines] > > So, any comments or advised? These are from previous posts....(watch for corrections from Steph or Chris or Clifto) J Ask your doctors about prescribing (mixing)/using this. "liquid mixture of nystatin, viscous xylocaine and an anti-inflammatory " (swish, gargle and/or swallow) If they don't mix it, ask them for prescription and find a compounding pharmacy. phlegm - cold fizzy soda water (club soda) very helpful. Club soda : Swill it, gargle it, spit it out if she doesn't want to swallow it. Chris wrote "Seltzer was wonderful." You can also ask your doctor if he has some samples of Ulcerease or a patient starter kit of Gelclair. Ulcerease: "an ideal treatment for those undergoing chemotherapy who have significant stomatitis, painful tongues (glossodynia), mouth ulcers and painful oral sores." (looks like for mouth only - says not to swallow) http://backupmd.com/uleasanmoutr.html >> 1. How to fight against nose congestion? >> I tried an inhalation tool; eucalyptus oil dropping into it's hot water; >> Lavender's creme or eucalyptus massage oil put into nostrils: >> With no impressive results. > > Vicks inhaler ? (it's the size of a lipstick tube) I recommend against that. Tried that as an alternative to the 12-hour nasal spray I use chronically; works at first, but takes more and more use to get less and less effect in a surprisingly short time. The same is true of the 4-hour nose drops (phenylephrine). I'd say ask doctor about using the 12-hour nasal spray; helps the nose, but it's a vasoconstrictor and might affect healing if it hits the wrong places. > and for sleep, dab some vicks (ointment) on tip of the nose (outside the nose) ? > [quoted text clipped - 12 lines] >> overall healing is connected to that - if you can use again your throat to >> swallow until it didn't became useless. If he's trying to get you to swallow, then swallowing must be doing more good than harm. Fight through it. >> So, any comments or advised? > [quoted text clipped - 7 lines] > phlegm - cold fizzy soda water (club soda) very helpful. Club soda : Swill it, gargle > it, spit it out if she doesn't want to swallow it. Chris wrote "Seltzer was wonderful." I like the "cold fizzy" part. :) > You can also ask your doctor if he has some samples of Ulcerease or a patient starter > kit of Gelclair. > Ulcerease: "an ideal treatment for those undergoing chemotherapy who have significant > stomatitis, painful tongues (glossodynia), mouth ulcers and painful oral sores." (looks > like for mouth only - says not to swallow) > http://backupmd.com/uleasanmoutr.html The UlcerEase is good stuff for the soreness; gargle a little, let a TINY bit trickle down your throat. Helps numb the pain a little. The Gelclair would be good for the dryness, though I'm not convinced it works a bunch better than the Biotene. SignatureAll relevant people are pertinent. All rude people are impertinent. Therefore, no rude people are relevant. -- Solomon W. Golomb > >> 1. How to fight against nose congestion? > > [quoted text clipped - 3 lines] > nasal spray I use chronically; works at first, but takes more and more > use to get less and less effect in a surprisingly short time. Dang ! I'm never make money off my investments. Vaseline, ozonol and vicks - I call it V.O.V. for the first aid kit. i guess I'll go spam the idea somewhere else ;) (just kidding about the investments, folks) > The same > is true of the 4-hour nose drops (phenylephrine). I'd say ask doctor [quoted text clipped - 8 lines] > If he's trying to get you to swallow, then swallowing must be doing more > good than harm. That's my impression as well as to their thinking. > >> So, any comments or advised? > [...] [quoted text clipped - 3 lines] > > I like the "cold fizzy" part. :) Yep, sounds delicious and I've been extra thirsty these days...must be Srping in the air. Thanks for your help here, Clifto. J >>>> 1. How to fight against nose congestion? >> > [quoted text clipped - 10 lines] > i guess I'll go spam the idea somewhere else ;) (just kidding about > the investments, folks) What's that? V.O.V.? What should do with it? >> The same >> is true of the 4-hour nose drops (phenylephrine). I'd say ask doctor [quoted text clipped - 11 lines] > > That's my impression as well as to their thinking. Mine too. But pain and nausea... ough! >>>> So, any comments or advised? >> [...] [quoted text clipped - 11 lines] > Thanks for your help here, Clifto. > J Thanks J, for thanking for me. SignatureRegards, Araik Margarian http://journals.aol.com/aramargar1/MyAmericanDream/ >>> 1. How to fight against nose congestion? >>> I tried an inhalation tool; eucalyptus oil dropping into it's hot [quoted text clipped - 7 lines] > use to get less and less effect in a surprisingly short time. The same > is true of the 4-hour nose drops (phenylephrine). That's right, Clifto! They all first worked very well, then completely lost their effectivness with me too. amazing! >I'd say ask doctor > about using the 12-hour nasal spray; helps the nose, but it's a > vasoconstrictor and might affect healing if it hits the wrong places. Hmmm, I'l ask. But what you mean by "it hits the wrong places"? One cannot be careful? >> and for sleep, dab some vicks (ointment) on tip of the nose (outside >> the nose) ? [quoted text clipped - 16 lines] > If he's trying to get you to swallow, then swallowing must be doing > more good than harm. Fight through it. I'am going to start. >>> So, any comments or advised? >> [quoted text clipped - 24 lines] > Gelclair would be good for the dryness, though I'm not convinced it > works a bunch better than the Biotene. I liked Gelclair more but Biotene is more available. SignatureRegards, Araik Margarian http://journals.aol.com/aramargar1/MyAmericanDream/ >>I'd say ask doctor >> about using the 12-hour nasal spray; helps the nose, but it's a >> vasoconstrictor and might affect healing if it hits the wrong places. > > Hmmm, I'l ask. But what you mean by "it hits the wrong places"? > One cannot be careful? No matter how careful you are squirting this stuff up your nose, some of it will trickle down the back of your nasopharynx. The cheaper versions come in a squirt bottle that will give a stream of liquid. Afrin brand offers an atomizer bottle that's somewhat reusable and gives a better dispersion, i.e. less medicine for the same coverage. If you want to try this stuff, this is your best bet. >> The UlcerEase is good stuff for the soreness; gargle a little, let a >> TINY bit trickle down your throat. Helps numb the pain a little. The >> Gelclair would be good for the dryness, though I'm not convinced it >> works a bunch better than the Biotene. > > I liked Gelclair more but Biotene is more available. Definitely. They also have a chewing gum available; you might have to ask a pharmacist to order it. I had the local Wal-Mart order it for me. It's a box of 16 pieces for about $1.59 US, and it's good stuff. I carry a sheet of 8 in my pocket at all times. Your dentist might have samples. SignatureAll relevant people are pertinent. All rude people are impertinent. Therefore, no rude people are relevant. -- Solomon W. Golomb >>> I'd say ask doctor >>> about using the 12-hour nasal spray; helps the nose, but it's a [quoted text clipped - 10 lines] > gives a better dispersion, i.e. less medicine for the same coverage. > If you want to try this stuff, this is your best bet. Do you know th name of it? Where to find it? Is it out of the counter? For second day I "enjoy" Vics Vapor Inhaler. but it may become ineffective soon too. >>> The UlcerEase is good stuff for the soreness; gargle a little, let a >>> TINY bit trickle down your throat. Helps numb the pain a little. The [quoted text clipped - 8 lines] > I carry a sheet of 8 in my pocket at all times. Your dentist might > have samples. Amazing how different people react... I liked mouthwash, toothpaste and Oral balance - dry mouth moisturizer from Biotene. But their gum - just was intolerable. All things are easyily available in CVS and specialy in Walgreens. But my main discovery of last days was "Club Soda". Thanks Steph- J- clifto trio! SignatureRegards, Araik Margarian http://journals.aol.com/aramargar1/MyAmericanDream/ > For second day I "enjoy" Vics Vapor Inhaler. but it may become ineffective > soon too. The more you sniff, the faster the tube full gets used up. Then try a 2nd one. I use tube for travel but at home I use ointment (on outside of nose - just a dab it's more concentrated). (but I think clifto said for you not to use ointment?) By the way, V.O.V. is an acronym that I created (just for fun). It does not exist. :) Me and Frank (Stew) developed CCKMA (cancer can kick my a.s), which he signs his posts with. :) > But my main discovery of last days was "Club Soda". Thanks Steph- J- clifto trio! I think you can thank Steph for that tip about Club Soda. He's who I heard it from. I hope it keeps helping you. J >> For second day I "enjoy" Vics Vapor Inhaler. but it may become >> ineffective >> soon too. > > The more you sniff, the faster the tube full gets used up. Actually I meant your body system becoming irresponsive to it, as with other things. > Then try a 2nd one. I use tube for travel but at home I use ointment > (on outside of nose - just a dab it's more concentrated). [quoted text clipped - 3 lines] > does not exist. :) Me and Frank (Stew) developed CCKMA (cancer can > kick my a.s), which he signs his posts with. :) Ah, I miss fun. long time. To create fun poems, to rejoyce in simple activities. But ... I hope , I hope , I hope... >> But my main discovery of last days was "Club Soda". Thanks Steph- J- >> clifto trio! > > I think you can thank Steph for that tip about Club Soda. He's who I > heard it from. Yes, but the things I read or heard months ago what I should expect and how to deal with after treatment, seemed much far and you always have a secret feeling that yes, there are such side effects but you would be spared of them. > I hope it keeps helping you. Still it has very good effects. A big bottle has 3% soda, small bottle - 4%, and it's much more "playful". > J SignatureRegards, Araik Margarian http://journals.aol.com/aramargar1/MyAmericanDream/ > "J" <analyse@invalid> wrote in message > > > > By the way, V.O.V. is an acronym that I created (just for fun). It > > does not exist. :) Me and Frank (Stew) developed CCKMA (cancer can > > kiss my a.s), which he signs his posts with. :) Note: above corrected...(I wrote "cancer can kick my a.s" - mistake > Ah, I miss fun. long time. To create fun poems, to rejoyce in simple > activities. [quoted text clipped - 13 lines] > Still it has very good effects. A big bottle has 3% soda, small bottle - 4%, > and it's much more "playful". I hear you, Araik, about missing the way things were, about hoping your side effects would not be so bad, about the Club Soda... . Here's to better todays. J >> Last time they say that MRI will be than in a month or so. > > That's fine. > On Feb 22, Steph posted to you, to give it 2 -3 months. ("before you > can start to get an idea of how well > treatment has gone.... " But I feel pain in my neck nodes, almost close to shoulders and feel the nodes. >> They say you are in good shape, just start to swallow. >> [quoted text clipped - 6 lines] > and for sleep, dab some vicks (ointment) on tip of the nose (outside > the nose) ? Recently I tried even that. No use. >> 2. How to fight against mucositites and phlegm? If I cough all the >> time, cough very hard and spit out these disgusting and pain causing [quoted text clipped - 24 lines] > Swill it, gargle it, spit it out if she doesn't want to swallow it. > Chris wrote "Seltzer was wonderful." I am using that already for 2 days. It's very good. I can recal it's even from an much earlier Steph recommendation. > You can also ask your doctor if he has some samples of Ulcerease or a > patient starter kit of Gelclair. [quoted text clipped - 3 lines] > to swallow) > http://backupmd.com/uleasanmoutr.html I'll ask about Ulcerease. I tried Gelclair and liked it. But when I asked for prescription, it appears that insurance does not cover it and it's ...$600. So, for the time being pain medication is most useful. SignatureRegards, Araik Margarian http://journals.aol.com/aramargar1/MyAmericanDream/ > I'll ask about Ulcerease. I had to ask the pharmacist to order some for me. A 6 oz. bottle was about $6 US. It goes a long way, you don't need to use a lot of it to get the effect. > I tried Gelclair and liked it. But when I asked > for prescription, > it appears that insurance does not cover it and it's ...$600. Yow! Ow! Oooo! See if the doctors will keep feeding you samples. :) SignatureAll relevant people are pertinent. All rude people are impertinent. Therefore, no rude people are relevant. -- Solomon W. Golomb > > http://backupmd.com/uleasanmoutr.html > [quoted text clipped - 3 lines] > > So, for the time being pain medication is most useful. http://www.gelclair.com/ says alliance with drugstore.com Before using Some medicines or medical conditions may interact with this medicine. Gelclair comes in 15 ml packets? Expensive ! Quantity Our Price 1 packet $68.25 3 packets $204.75 4 packets $273.00 5 packets $341.25 6 packets $409.50 From the archives, a 15 years with Nasopharyngeal Carcinoma Parent posted "First she swishes with the Gelclair then she dabs on the ointment/gel which is called Kenalog Orabase it seems to be a very effective combination " Have you asked your dentist if (s)he has samples? J > Gelclair comes in 15 ml packets? > Expensive ! > Quantity Our Price > 1 packet $68.25 Speaking for my own situation, the stuff might be worth a buck a packet, maybe even two bucks. But it would have to be the answer to a prayer to be worth $4,550 per liter. <http://www.dentist.net/biotene-oral-balance-gel.asp> is probably just as good. I'll try both this week and report. SignatureAll relevant people are pertinent. All rude people are impertinent. Therefore, no rude people are relevant. -- Solomon W. Golomb >> Gelclair comes in 15 ml packets? >> Expensive ! [quoted text clipped - 7 lines] > <http://www.dentist.net/biotene-oral-balance-gel.asp> is probably >just as good. I'll try both this week and report. I am using it time by time. It's available in CVS. Not as magic thing as Club Soda, but it works not bad. I don't like that it has sweet into it. SignatureRegards, Araik Margarian http://journals.aol.com/aramargar1/MyAmericanDream/ > "clifto" <clifto@gmail.com> wrote... >> <http://www.dentist.net/biotene-oral-balance-gel.asp> is probably [quoted text clipped - 3 lines] > Club Soda, > but it works not bad. I don't like that it has sweet into it. It's xylitol. It tastes sweet but doesn't have digestible sugar in it. I think it even has an enzyme in it that decomposes glucose that may already be in your mouth (glucose oxidase; the mouthwash has it). SignatureAll relevant people are pertinent. All rude people are impertinent. Therefore, no rude people are relevant. -- Solomon W. Golomb >> Gelclair comes in 15 ml packets? >> Expensive ! [quoted text clipped - 7 lines] > <http://www.dentist.net/biotene-oral-balance-gel.asp> is probably > just as good. I'll try both this week and report. Now I feel really bad :-( I gave two cases of the stuff and the sample kit to the chemo clinic to give to somebody who might need it. I did that at the same time I gave them the six and a half cases of the C-15 PEG food. I just got tired of looking at it and couldn't bear to throw it away. After getting the sample kit and the perscription filled, I read the instructions about not swallowing and all the hassle of using the stuff, I gave up and just used the magic mouthwash and an occasional codeine. >>> Gelclair comes in 15 ml packets? >> [quoted text clipped - 3 lines] > Now I feel really bad :-( I gave two cases of the stuff and the sample kit > to the chemo clinic to give to somebody who might need it. At least it's likely someone who can't afford it will get it, even if it isn't a member of our group. SignatureAll relevant people are pertinent. All rude people are impertinent. Therefore, no rude people are relevant. -- Solomon W. Golomb |
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