Nasopharyngeal cancer
My wife was diagnosed with Stage IVb Nasopharyngeal carcinoma (NPC) around a month ago, and is being treated in Taiwan, where the disease is much more common than in Western countries. It would appear that Chinese people are predisposed to the undifferentiated form of the cancer. She is 32 years old. She did an MRI scan, bone scan, chest xray and pet scan and was staged with T4N3aM0 undifferentiated NPC. The size of her larger neck node was measured at 8cm diameter. She had no other presenting symptoms other than the neck lump, which suddenly flared up in June. Undifferentiate NPC is the most aggressive form of the cancer, but conversely the most responsive to radiotherapy.
In Taiwan, they start straight away on concurrent chemoradiation. She is being given 7 weekly doses of 30mg/m2 cisplatin with 35 sessions of radiotherapy (IMRT) lasting for 15 minutes each, 5 days per week - so the treatment is due to last 7 weeks. She's done nearly 3 weeks so far.
She takes glutamine supplements to try to help with mucositis (throat sore), and they give her several anti-nausea drugs to help overcome the side-effects of cisplatin. The main drug they give against cisplatin (they give quite a few different medicines) is a 5-F3 inhibitor, which in her case is Tropisetron. They also give another drug called Emend (aprepitant) if the nausea gets really bad, which she hasn't needed yet. She still feels the nausea on days 2 and 3 after chemotherapy though, although she hasn't vomited at all during treatment so far.
Some of the hair on the back of her head has fallen out and the side of her neck is darkened due to the radiotherapy, but she hasn't really got a sore throat yet. She complains that her taste is really odd though, that things taste of "lead". She brushes her teeth with dry mouth toothpaste and has a special mouthwash to use.
Her lump has gone down a lot on her neck - so much that it is barely visible any more - and she had another CT scan at the end of last week to re-work her mask and to make sure the radiotherapy was still aiming at the right places! All that seems to be left on her neck is a tiny lump, which isn't visible to the naked eye, and that is shrinking back too. This has obviously given me a great deal of hope, as apparently this speed of response doesn't always occur. The correct doctor wasn't present at the CT scan last week, but we'll ask her about the state of the primary tumour when we see her next.
The main problem we have at the moment is that her blood count last week showed falling white blood cell count, and she might have to miss some chemotherapy if it falls much further.
They aren't using 5FU during the treatment (the toxicity is too great), and they say she doesn't require a PEG tube for her stomach. We'll just have to wait and see if that's a good idea...
Comments
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Some Thoughts
Sorry to hear that your wife has NPC. I am not familiar with it but offer these comments: The diagnosis and treatment plan appear thorough and top notch. The Emend worked very well for me; I'm convinced it pre-empted a lot of nausea. Cisplatin often results in a metallic taste that is terrible but short-lived. Her blood count might be improved with a medication such as Neulesta. Lastly, and most importantly, the speed and extent of her response to treatment are strong indicators of a cure-in-progress. Best to both of you. Rich0 -
My best wishes to your wife.train-nut said:Some Thoughts
Sorry to hear that your wife has NPC. I am not familiar with it but offer these comments: The diagnosis and treatment plan appear thorough and top notch. The Emend worked very well for me; I'm convinced it pre-empted a lot of nausea. Cisplatin often results in a metallic taste that is terrible but short-lived. Her blood count might be improved with a medication such as Neulesta. Lastly, and most importantly, the speed and extent of her response to treatment are strong indicators of a cure-in-progress. Best to both of you. Rich
My best wishes to your wife. It does sound like your wife is getting the best treatment available to date.
Yes, the taste will be affected. For a period of time, she might even lose all her taste. Tell her not to get discouraged. It will get better.
I also had low blood counts and ended up with missing one of six chemo treatments. The doctors waited a month to see if my counts will improve. Finally, they gave me a Neulesta shot and then my last chemo.
It's been four and half years since my last treatment. Survival rate is excellent, but the treatment is rough. It will get tougher, but she is young.
I'm female, so what got me through is that if I can get through two pregnancies and two child births (one cesarean), I can handle the cancer stuff.
Christmas0 -
ThanksChristmas said:My best wishes to your wife.
My best wishes to your wife. It does sound like your wife is getting the best treatment available to date.
Yes, the taste will be affected. For a period of time, she might even lose all her taste. Tell her not to get discouraged. It will get better.
I also had low blood counts and ended up with missing one of six chemo treatments. The doctors waited a month to see if my counts will improve. Finally, they gave me a Neulesta shot and then my last chemo.
It's been four and half years since my last treatment. Survival rate is excellent, but the treatment is rough. It will get tougher, but she is young.
I'm female, so what got me through is that if I can get through two pregnancies and two child births (one cesarean), I can handle the cancer stuff.
Christmas
Thank you both for your comments and encouragement. They were also very informative.
I will get my wife to ask about the white blood cell boosting treatment today when she goes in to see the doctor, if her white blood count is low (they use some kind of concentration measure where if it falls below 3000, they have to suspend chemo temporarily). She has a blood test every week on Monday (it's 9am on Tuesday morning now) to test for CBC (complete blood count) and creatinine, which is for kidney function. We'll also enquire as to how to last CAT scan went.
Christmas, I'm glad you've pulled through, and wish you a long and happy life. I believe that if the cancer returns, it's most likely to re-appear in the first couple of years, because they've told us she'll have to have near-monthly MRI scans for the first couple of years, then falling back to once every 6 months by year 4-5. So the chance of recurrence must be vastly reduced by now in your case.
I'll repost at the end of her treatment in 4 weeks, to let you know how she got on by the end. I know by then she'll be feeling a lot worse with mucositis and the cumulative effect of treatment, but she's got strong support here in Taiwan from myself and her family.
In terms of cause of NPC, there seems to be much controversy. The type she has seems to be activated by Epstein-Barr virus (EBV). They did a test for a marker of EBV at the start of her treatment, and it came back over the expected range (reading of approx 20 vs 3-8 expected, indicating elevated level). From what I've read, virtually everyone has EBV, however, so there has to be some other cause to activate the cancer. Certain gene weaknesses have been identified (although not proven) especially in Chinese people, which appear to increase the hazard level. Males are also more at risk: In taipei, the ratio of male:female is about 2.5-3:1.
In addition, environmental factors seem to play a part: eating salted (preserved) meats and fish, working in "dusty" industry such as glassmaking, textiles, road building, etc. From what I've read, smoking/drinking don't raise a person's likelihood of getting this particular cancer, in contrast to many of the other head and neck cancers.
The interesting thing about EBV (and this is what I've read, rather than what I've heard from a doctor) is that it can be a useful predictor of recurrence. In some places, if you don't get a negative result for a certain EBV test, they'll give you some more chemotherapy at the end, if you can take it. Near the end of her treatment, I'll ask her doctors more about this, and if that is best practice. I'm not sure if EBV is so implied in type I NPC (well-defined keratinizing).0 -
Nasopharyngeal Cancer
Dont worry Mr it sounds like things are going well if the tumour is shrinking already. I had 4 secondaries in 95 and only had 4 chemos of Methetrexate and 37 radios. I was never sick and put that down to my Domperidone tablets ( I called them my Don Perignon tabs ) as I ate like 2 horses during the chemo UNTIL the mouth ulcers started. My weight went from 156lbs to 189lbs but I lost all that after treatment due to mouth ulcers and ended up at 136lbs. But i have put it back on and Im now a cuddly 160lbs. It eventually took 3 months after the treatment stopped for the last tumour to go. Im happy to have no sense of taste, no sense of smell, very little saliva gland function and happy cos I dont have to shave under my neck due to skin and hair just getting zapped, except for the part that was covered over to protect the upper spinal column - its great to be alive. I always say it was Gods way of getting me to stop smoking!!! It worked.
Tell your wife that every reson who beat NPC and those fighting NPC will be sdaying a prayer for her tonight.0 -
End of treatmentRonInScotland said:Nasopharyngeal Cancer
Dont worry Mr it sounds like things are going well if the tumour is shrinking already. I had 4 secondaries in 95 and only had 4 chemos of Methetrexate and 37 radios. I was never sick and put that down to my Domperidone tablets ( I called them my Don Perignon tabs ) as I ate like 2 horses during the chemo UNTIL the mouth ulcers started. My weight went from 156lbs to 189lbs but I lost all that after treatment due to mouth ulcers and ended up at 136lbs. But i have put it back on and Im now a cuddly 160lbs. It eventually took 3 months after the treatment stopped for the last tumour to go. Im happy to have no sense of taste, no sense of smell, very little saliva gland function and happy cos I dont have to shave under my neck due to skin and hair just getting zapped, except for the part that was covered over to protect the upper spinal column - its great to be alive. I always say it was Gods way of getting me to stop smoking!!! It worked.
Tell your wife that every reson who beat NPC and those fighting NPC will be sdaying a prayer for her tonight.
Thanks Ron, we appreciate your support.
Well, the treatment is finished, and in the end my wife's white blood count held up, so she had 35 radiotherapies and 7 chemos. She got quite a bit more mucositis in the last couple of weeks and has been vomiting in the last couple of days (which the doctor says is a bit odd - could be a bug rather than reaction to the treatment), but she's managed to eat food all the way through the seven weeks, and even ate some KFC a couple of days ago! She's been supplementing her food with some Ensure drinks for the last few days, although she's found it difficult because of the vomiting. She's lost about 4 kilos through the treatment, which is really good I think. Now we look forward to the recovery.
We'll be back into the hospital at the start of November, and the dreaded MRI will take place shortly after then, although I'll have gone back to England before that time. The CT scan she had for reprecisioning a few weeks ago still showed some cancer cells in the primary site and neck nodes (as expected - it was only half way through the treatment), so I'm just hoping that she's responded well enough to the final half of the treatment to get rid of whatever was left. She's also just been given a blood test for EBV levels and antibodies, which I think can be predictive of recurrence... scary stuff, I don't really like thinking about it to be honest.
P.S. I'll tell her she won't have to shave her neck any more!!!0 -
Congratulations! SoundsMr Taipei said:End of treatment
Thanks Ron, we appreciate your support.
Well, the treatment is finished, and in the end my wife's white blood count held up, so she had 35 radiotherapies and 7 chemos. She got quite a bit more mucositis in the last couple of weeks and has been vomiting in the last couple of days (which the doctor says is a bit odd - could be a bug rather than reaction to the treatment), but she's managed to eat food all the way through the seven weeks, and even ate some KFC a couple of days ago! She's been supplementing her food with some Ensure drinks for the last few days, although she's found it difficult because of the vomiting. She's lost about 4 kilos through the treatment, which is really good I think. Now we look forward to the recovery.
We'll be back into the hospital at the start of November, and the dreaded MRI will take place shortly after then, although I'll have gone back to England before that time. The CT scan she had for reprecisioning a few weeks ago still showed some cancer cells in the primary site and neck nodes (as expected - it was only half way through the treatment), so I'm just hoping that she's responded well enough to the final half of the treatment to get rid of whatever was left. She's also just been given a blood test for EBV levels and antibodies, which I think can be predictive of recurrence... scary stuff, I don't really like thinking about it to be honest.
P.S. I'll tell her she won't have to shave her neck any more!!!
Congratulations! Sounds like she came through amazingly well. Please check back now and then. We survivors like to know how other survivors are coming along.0 -
My mom was just diagnosed with NPCMr Taipei said:End of treatment
Thanks Ron, we appreciate your support.
Well, the treatment is finished, and in the end my wife's white blood count held up, so she had 35 radiotherapies and 7 chemos. She got quite a bit more mucositis in the last couple of weeks and has been vomiting in the last couple of days (which the doctor says is a bit odd - could be a bug rather than reaction to the treatment), but she's managed to eat food all the way through the seven weeks, and even ate some KFC a couple of days ago! She's been supplementing her food with some Ensure drinks for the last few days, although she's found it difficult because of the vomiting. She's lost about 4 kilos through the treatment, which is really good I think. Now we look forward to the recovery.
We'll be back into the hospital at the start of November, and the dreaded MRI will take place shortly after then, although I'll have gone back to England before that time. The CT scan she had for reprecisioning a few weeks ago still showed some cancer cells in the primary site and neck nodes (as expected - it was only half way through the treatment), so I'm just hoping that she's responded well enough to the final half of the treatment to get rid of whatever was left. She's also just been given a blood test for EBV levels and antibodies, which I think can be predictive of recurrence... scary stuff, I don't really like thinking about it to be honest.
P.S. I'll tell her she won't have to shave her neck any more!!!
Hello Mr. Taipei,
My mother is a 56-year-old caucasian just newly diagnosed with nasapharyngeal cancer (stage 4). Your posts have been very informative and insightful. She was diagnosed on 10/3/08 and will hopefully begin radiation on 10/27/08. She is currently undergoing some pre-radiation dental work and has yet to have her PET scan. I'm curious - did your wife explore any naturopathic remedies to counteract side effects of radiation/chemo? My mother is 5'7" and currently weighs only 109 lbs. I'm very concerned about her ability to maintain a healthy weight in order to fight this disease.
Her treatment plan sounds sinilar to that of your wife's. 37 sessions of radiation (5 days a week)with 3 chemo sessions during this seven week period (Ciplatin, 5FU). She will also have four consecutive days of chemo at the conclusion of her radiation.
Your wife's battle against this horrible thing that is occuring in her life sounds courageous. I wish you both the very best as she concludes her treatment.0 -
Hi NickInNickiN said:My mom was just diagnosed with NPC
Hello Mr. Taipei,
My mother is a 56-year-old caucasian just newly diagnosed with nasapharyngeal cancer (stage 4). Your posts have been very informative and insightful. She was diagnosed on 10/3/08 and will hopefully begin radiation on 10/27/08. She is currently undergoing some pre-radiation dental work and has yet to have her PET scan. I'm curious - did your wife explore any naturopathic remedies to counteract side effects of radiation/chemo? My mother is 5'7" and currently weighs only 109 lbs. I'm very concerned about her ability to maintain a healthy weight in order to fight this disease.
Her treatment plan sounds sinilar to that of your wife's. 37 sessions of radiation (5 days a week)with 3 chemo sessions during this seven week period (Ciplatin, 5FU). She will also have four consecutive days of chemo at the conclusion of her radiation.
Your wife's battle against this horrible thing that is occuring in her life sounds courageous. I wish you both the very best as she concludes her treatment.
I encouraged my wife to eat as much as she could before the treatment started. She put on about 2kg (5lb) before the treatment started. In our experience, the effects of the radiation (the sore throat/mucositis) can take a few weeks to really kick in, so you can still eat OK, although the chemotherapy can have affect on appetite because it causes nausea and also dulls the tastebuds. To this day my wife still can't taste "sweet" foods, although I believe this should gradually come back.
My wife didn't have 5FU in the chemotherapy, only Cisplatin. Don't worry - I believe that Cisplatin + 5FU is the "gold standard" for treatment, but I think 5FU can also contribute to mucositis, so your mum might feel more sore throat than my wife did. In England they fit a PEG tube in the patient's stomach before treatment to help if the sore throat gets too bad.
My wife didn't take any alternative remedies to counteract the therapy - she doesn't believe in them or Chinese herbal medicine, etc. One thing she didn't do was use any air-conditioning at home - basically, you should try to keep the throat as moist as possible, so humidity is good. She also used glutamine as a supplement to help mucositis (although official research into its use is sketchy), and used a cream on her neck (sorry, can't remember its name). She ate quite a lot of fish and meat with noodles (wet stuff is good). She drank lots of water, at least 2.5 litres/day if she could.
So basically I'd encourage your mum to eat as much now as she can before the therapy starts, and to keep going for it as long as possible during treatment. My wife is now eating properly again and not losing any more weight - she lost around 10 lbs total during the treatment.
Remember, everyone reacts differently to the treatment. What works for one person might not have the same effect on another. Some people here stay in hospital and go on a drip during treatment because they can't eat or get too weak. Talk to your mum's oncologist (or ENT doctor) about your concerns with helping her weight as they may have better insight into this.
By the way, you will always get worried about something! During treatment, I was worried about my wife's white blood cell count (it's common for white blood cell count to fall during treatment). Now, I worry that my wife coped with the treatment too well and that maybe the cancer also survived! What's most important though is that you stay outwardly strong and positive and give as much help and support as is humanly possible.
Anyway I wish your mum a successful treatment and you and your family best wishes.0 -
Side EffectsMr Taipei said:Hi NickIn
I encouraged my wife to eat as much as she could before the treatment started. She put on about 2kg (5lb) before the treatment started. In our experience, the effects of the radiation (the sore throat/mucositis) can take a few weeks to really kick in, so you can still eat OK, although the chemotherapy can have affect on appetite because it causes nausea and also dulls the tastebuds. To this day my wife still can't taste "sweet" foods, although I believe this should gradually come back.
My wife didn't have 5FU in the chemotherapy, only Cisplatin. Don't worry - I believe that Cisplatin + 5FU is the "gold standard" for treatment, but I think 5FU can also contribute to mucositis, so your mum might feel more sore throat than my wife did. In England they fit a PEG tube in the patient's stomach before treatment to help if the sore throat gets too bad.
My wife didn't take any alternative remedies to counteract the therapy - she doesn't believe in them or Chinese herbal medicine, etc. One thing she didn't do was use any air-conditioning at home - basically, you should try to keep the throat as moist as possible, so humidity is good. She also used glutamine as a supplement to help mucositis (although official research into its use is sketchy), and used a cream on her neck (sorry, can't remember its name). She ate quite a lot of fish and meat with noodles (wet stuff is good). She drank lots of water, at least 2.5 litres/day if she could.
So basically I'd encourage your mum to eat as much now as she can before the therapy starts, and to keep going for it as long as possible during treatment. My wife is now eating properly again and not losing any more weight - she lost around 10 lbs total during the treatment.
Remember, everyone reacts differently to the treatment. What works for one person might not have the same effect on another. Some people here stay in hospital and go on a drip during treatment because they can't eat or get too weak. Talk to your mum's oncologist (or ENT doctor) about your concerns with helping her weight as they may have better insight into this.
By the way, you will always get worried about something! During treatment, I was worried about my wife's white blood cell count (it's common for white blood cell count to fall during treatment). Now, I worry that my wife coped with the treatment too well and that maybe the cancer also survived! What's most important though is that you stay outwardly strong and positive and give as much help and support as is humanly possible.
Anyway I wish your mum a successful treatment and you and your family best wishes.
Some side effects are somewhat related to treatment effectiveness at certain cancer locations. However, my care team told me this is not the case with nearly all head and neck cancer. My compliments to your wife for having done so well. Her attitude, your support and a comprehensive treatment plan have yielded success. My best to both of you. Rich0 -
Thanks for your prompt reply!
Thank you Mr. Taipai for your prompt response. It sounds like your wife's tumor has responded well to treatment. (I am a registered nurse and actually recruit physicians for a large health system so I've spoken with many of my physician contacts who claim that these particular tumors are highly sensitive to radiation therapy.)I wish her vibrant health!
While my mother did experience a initial swelling in her neck (after a severe cold), it actually went away and her first real serious sign that something was wrong was visual changes. She has double and refracted vision (right now she is wearing a patch over one eye). She is also having significant pain in her head. Many strange "electrical" sensations as well. Did your wife have much head pain?
I realized I forgot the third chemotherapy drug in her regimine - avastin. They also want to start her with the PEG tube right at the beginning of treatment. I assume that is because she is underweight to begin with. She truly can't afford to even lose 10 pounds!
Your comment about your fear that the cancer "survived" because your wife had minimal side effects actually made me smile. I remember when I was pregnant being concerned that I didn't have "morning sickness". In my mind - it meant that my HCG levels were too low and I was going to miscarry. Human nature is funny....
My mom's PET scan was yesterday so right now my positive energy is focused on a clean scan. I'll start worrying about radiation next week....0 -
NickiN said:
Thanks for your prompt reply!
Thank you Mr. Taipai for your prompt response. It sounds like your wife's tumor has responded well to treatment. (I am a registered nurse and actually recruit physicians for a large health system so I've spoken with many of my physician contacts who claim that these particular tumors are highly sensitive to radiation therapy.)I wish her vibrant health!
While my mother did experience a initial swelling in her neck (after a severe cold), it actually went away and her first real serious sign that something was wrong was visual changes. She has double and refracted vision (right now she is wearing a patch over one eye). She is also having significant pain in her head. Many strange "electrical" sensations as well. Did your wife have much head pain?
I realized I forgot the third chemotherapy drug in her regimine - avastin. They also want to start her with the PEG tube right at the beginning of treatment. I assume that is because she is underweight to begin with. She truly can't afford to even lose 10 pounds!
Your comment about your fear that the cancer "survived" because your wife had minimal side effects actually made me smile. I remember when I was pregnant being concerned that I didn't have "morning sickness". In my mind - it meant that my HCG levels were too low and I was going to miscarry. Human nature is funny....
My mom's PET scan was yesterday so right now my positive energy is focused on a clean scan. I'll start worrying about radiation next week....
Wishing both of you the
Wishing both of you the very best for your wife and your mom. My first thought after reading this thread was to explore and look at the thread further down concerning protecting the saliva glands during radiation therapy.
I went through just short of nine weeks for naspharyngeal cancer in 1998. I volunteered for chemo at the same time and got extremely sick. After two chemo treatments, I gave it up. After radiation and about two months later, I was scheduled for a direct radiation implant for my lymph node.
After about five weeks, I could no longer eat and was luckily I could drink one can of ensure for the day. I lost a lot of weight and my red/white blood cell count was low. Thus, during the later stages, I spent most of the time in bed.
Talking about morning sickness, I just could not stand the smell of food cooking. I am male and now I believe I know the feeling of being nauseating during pregnancy. I do not know if it is the same. They gave me some pills, but it was my fault I did not take them.
After radiation treatment, I did not pursue further chemo. I looked at other natural type remedies and decided to try them. I think that those natural remedies and prayers got me where I am today.
I still have the permanent side effects as noted in several threads in this forum. The biggest thing is lack of saliva. I have difficulty eating today, 10 plus years after treatment. My taste buds are not all there. Sometimes, I have ear pressurization problems. Despite all these handicaps, I am just happy to be here after getting cancer.
I carry a bottle of water, not for drinking but to moist my mouth.
Good luck and my prayers to you folks.
Johnny0 -
Thanks for both yourHAWVET said:
Wishing both of you the
Wishing both of you the very best for your wife and your mom. My first thought after reading this thread was to explore and look at the thread further down concerning protecting the saliva glands during radiation therapy.
I went through just short of nine weeks for naspharyngeal cancer in 1998. I volunteered for chemo at the same time and got extremely sick. After two chemo treatments, I gave it up. After radiation and about two months later, I was scheduled for a direct radiation implant for my lymph node.
After about five weeks, I could no longer eat and was luckily I could drink one can of ensure for the day. I lost a lot of weight and my red/white blood cell count was low. Thus, during the later stages, I spent most of the time in bed.
Talking about morning sickness, I just could not stand the smell of food cooking. I am male and now I believe I know the feeling of being nauseating during pregnancy. I do not know if it is the same. They gave me some pills, but it was my fault I did not take them.
After radiation treatment, I did not pursue further chemo. I looked at other natural type remedies and decided to try them. I think that those natural remedies and prayers got me where I am today.
I still have the permanent side effects as noted in several threads in this forum. The biggest thing is lack of saliva. I have difficulty eating today, 10 plus years after treatment. My taste buds are not all there. Sometimes, I have ear pressurization problems. Despite all these handicaps, I am just happy to be here after getting cancer.
I carry a bottle of water, not for drinking but to moist my mouth.
Good luck and my prayers to you folks.
Johnny
Thanks for both your comments.
My wife didn't get any symptoms of the cancer other than a swelling on her neck. This delayed her diagnosis because the ENT consultant in England took neck samples through a fine needle test and they all came back negative or inconclusive. I think that it's fairly unusual to have no symptoms of the primary tumour when it is T4 stage, but she didn't.
In terms of the tolerance of chemo, I think there are better drugs available now for severe nausea, such as Emend (aprepitant) and the 5-F3 inhibitor drugs. My wife drank 2 1/2 litres water per day because Cisplatin is known to cause problems for the kidneys - the hospital will measure your mum's creatinine level as a proxy for kidney function to make sure it's within a desired range, and drinking lots of water helps to keep the kidneys healthy.
I think fitting a PEG tube before treatment is standard practice because fitting it after the start can lead to complications with potential infections. Towards the end of the treatment (the last two weeks) she took some Morphine for the mucositis (the sore throat from radiotherapy), but she didn't need a tube.
In terms of salivary function, my wife's seems to be ok-ish, a little bit reduced but not too bad. I don't know if it gets worse long after radiotherapy, but my wife has finished treatment 2 1/2 weeks ago and she can eat most things fine, including things like steak, bread, etc. She does prefer moist food though, and as I said before she can't taste sweet things.
Because of the size and location of the neck metastases, the doctor warned of possible long term damage to her right ear. We'll just have to wait and see on that I guess. My wife's back in to see the doctor at the start of November, but won't get scanned until December I think.
Wishing you both all the best, and hope you get good news from the PET scan, Nickin.0 -
SweetsMr Taipei said:Thanks for both your
Thanks for both your comments.
My wife didn't get any symptoms of the cancer other than a swelling on her neck. This delayed her diagnosis because the ENT consultant in England took neck samples through a fine needle test and they all came back negative or inconclusive. I think that it's fairly unusual to have no symptoms of the primary tumour when it is T4 stage, but she didn't.
In terms of the tolerance of chemo, I think there are better drugs available now for severe nausea, such as Emend (aprepitant) and the 5-F3 inhibitor drugs. My wife drank 2 1/2 litres water per day because Cisplatin is known to cause problems for the kidneys - the hospital will measure your mum's creatinine level as a proxy for kidney function to make sure it's within a desired range, and drinking lots of water helps to keep the kidneys healthy.
I think fitting a PEG tube before treatment is standard practice because fitting it after the start can lead to complications with potential infections. Towards the end of the treatment (the last two weeks) she took some Morphine for the mucositis (the sore throat from radiotherapy), but she didn't need a tube.
In terms of salivary function, my wife's seems to be ok-ish, a little bit reduced but not too bad. I don't know if it gets worse long after radiotherapy, but my wife has finished treatment 2 1/2 weeks ago and she can eat most things fine, including things like steak, bread, etc. She does prefer moist food though, and as I said before she can't taste sweet things.
Because of the size and location of the neck metastases, the doctor warned of possible long term damage to her right ear. We'll just have to wait and see on that I guess. My wife's back in to see the doctor at the start of November, but won't get scanned until December I think.
Wishing you both all the best, and hope you get good news from the PET scan, Nickin.
I used to love sweets, now I can't taste them. A dentist suggested tart flavored things...limeaide, cherry pie, lemon drops, etc. They taste terrific to me. Hope your wife can enjoy them too. Rich0 -
Natural remediesHAWVET said:
Wishing both of you the
Wishing both of you the very best for your wife and your mom. My first thought after reading this thread was to explore and look at the thread further down concerning protecting the saliva glands during radiation therapy.
I went through just short of nine weeks for naspharyngeal cancer in 1998. I volunteered for chemo at the same time and got extremely sick. After two chemo treatments, I gave it up. After radiation and about two months later, I was scheduled for a direct radiation implant for my lymph node.
After about five weeks, I could no longer eat and was luckily I could drink one can of ensure for the day. I lost a lot of weight and my red/white blood cell count was low. Thus, during the later stages, I spent most of the time in bed.
Talking about morning sickness, I just could not stand the smell of food cooking. I am male and now I believe I know the feeling of being nauseating during pregnancy. I do not know if it is the same. They gave me some pills, but it was my fault I did not take them.
After radiation treatment, I did not pursue further chemo. I looked at other natural type remedies and decided to try them. I think that those natural remedies and prayers got me where I am today.
I still have the permanent side effects as noted in several threads in this forum. The biggest thing is lack of saliva. I have difficulty eating today, 10 plus years after treatment. My taste buds are not all there. Sometimes, I have ear pressurization problems. Despite all these handicaps, I am just happy to be here after getting cancer.
I carry a bottle of water, not for drinking but to moist my mouth.
Good luck and my prayers to you folks.
Johnny
Dear Johnny -
While I'm thrilled to hear that you battled this disease and are around 10 years later to talk about it, the side effects of the treatment are certainly scary. Can I ask what "natural remedies" you turned to after you decided to stop traditional treatment? It does not sound like you had a PEG tube for feeding...is this correct?0 -
Nick, I do not wish to placeNickiN said:Natural remedies
Dear Johnny -
While I'm thrilled to hear that you battled this disease and are around 10 years later to talk about it, the side effects of the treatment are certainly scary. Can I ask what "natural remedies" you turned to after you decided to stop traditional treatment? It does not sound like you had a PEG tube for feeding...is this correct?
Nick, I do not wish to place remedies in a public forum but I will be glad to share what we did. Email me at pmjr101@hotmail.com0 -
Any updates?Mr Taipei said:Thanks for both your
Thanks for both your comments.
My wife didn't get any symptoms of the cancer other than a swelling on her neck. This delayed her diagnosis because the ENT consultant in England took neck samples through a fine needle test and they all came back negative or inconclusive. I think that it's fairly unusual to have no symptoms of the primary tumour when it is T4 stage, but she didn't.
In terms of the tolerance of chemo, I think there are better drugs available now for severe nausea, such as Emend (aprepitant) and the 5-F3 inhibitor drugs. My wife drank 2 1/2 litres water per day because Cisplatin is known to cause problems for the kidneys - the hospital will measure your mum's creatinine level as a proxy for kidney function to make sure it's within a desired range, and drinking lots of water helps to keep the kidneys healthy.
I think fitting a PEG tube before treatment is standard practice because fitting it after the start can lead to complications with potential infections. Towards the end of the treatment (the last two weeks) she took some Morphine for the mucositis (the sore throat from radiotherapy), but she didn't need a tube.
In terms of salivary function, my wife's seems to be ok-ish, a little bit reduced but not too bad. I don't know if it gets worse long after radiotherapy, but my wife has finished treatment 2 1/2 weeks ago and she can eat most things fine, including things like steak, bread, etc. She does prefer moist food though, and as I said before she can't taste sweet things.
Because of the size and location of the neck metastases, the doctor warned of possible long term damage to her right ear. We'll just have to wait and see on that I guess. My wife's back in to see the doctor at the start of November, but won't get scanned until December I think.
Wishing you both all the best, and hope you get good news from the PET scan, Nickin.
Hey there Mr. Taipei -
You and your wife have been on my mind and I just wondered how things were going for you both. My mother started chemo (just Cisplatin by the way ... they may add the 5 FU at the end as a "boost", but that remains to be seen!) and radiation last week. She has a significant amount of nausea and some vomiting over the weekend (even with the IV Emend and PO Compazine), but I think she has turned a corner today. She will have the PEG tube inserted on Thursday.
I was able to be there for her initial chemo and I am thankful for that. I am quite certain that she has fallen into some depression and am encouraging her to get involved with a support group or at least talk to the psychiatrist one-on-one, but she has never been much of a "joiner" and I will have to push her kicking and screaming.
I hope to hear a good report back from you!0 -
ChemoNickiN said:Any updates?
Hey there Mr. Taipei -
You and your wife have been on my mind and I just wondered how things were going for you both. My mother started chemo (just Cisplatin by the way ... they may add the 5 FU at the end as a "boost", but that remains to be seen!) and radiation last week. She has a significant amount of nausea and some vomiting over the weekend (even with the IV Emend and PO Compazine), but I think she has turned a corner today. She will have the PEG tube inserted on Thursday.
I was able to be there for her initial chemo and I am thankful for that. I am quite certain that she has fallen into some depression and am encouraging her to get involved with a support group or at least talk to the psychiatrist one-on-one, but she has never been much of a "joiner" and I will have to push her kicking and screaming.
I hope to hear a good report back from you!
Hi Nickin,
Yes, it's important you (and others) are there for your mum throughout the treatment, and to remain positive to help her frame of mind - a large proportion of the treatment will be psycologically difficult as well as physical. My wife found that 2-4 days after the chemo was the worst for her, but then would get better each week.
My wife's MRI is at the end of December (yes I know, a long time away still!), and I am going to have to go back to England in the meantime - I have decided to go back to work. She's recovered well after the end of treatment, and her mouth isn't too dry - she just can't eat things like popcorn and crackers.
I'll keep thinking about you and your mum - just keep up the encouragement!0 -
Hallo
Just thought I would give you an update, in case anyone was interested.
My wife had an MRI scan at the end of December, and it came back clear! So far so good, although obviously I'm aware that it's going to be a long road ahead.
She's also got back her taste buds and has put on most of the weight she lost during her treatment.0 -
Great NewsMr Taipei said:Hallo
Just thought I would give you an update, in case anyone was interested.
My wife had an MRI scan at the end of December, and it came back clear! So far so good, although obviously I'm aware that it's going to be a long road ahead.
She's also got back her taste buds and has put on most of the weight she lost during her treatment.
Thank you for letting us know all is well. Wonderful news. Good Health to all, Rich0
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