Newly diagnosed...need advice.
Comments
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JohnKent Cass said:Kimba
Kimba- the Port will likely be dependent on what your Onco has planned, and where said Onco thinks this might take Mark in the worst times. I am both Port and PEG- carried two pumps hooked-into the Port for 96-hours, twice. That seems to be the reason for the Port- having one, or two, pumps going 24/7 for 96-hours. The only other time my Port was used was when I was hospitalized for 4 days, during which the antibiotic drips, etc., were delivered via IV into the Port.
As for the PEG, or feeding tube- to me, it just makes sense for H&N, where the eating ability is impacted by treatment that puts a hit on the mouth and throat. I've had my PEG since 1/09. Though PEGs are a nuissance, long term, for some of us there is a time in treatment when they can be a critical necessity. And even if such an extreme need doesn't develop, they can be used to make the getting of nutrition so much easier- having a PEG will help a lot with the all-important nutrition.
The best to you and Mark
kcass
Sorry about that didn't see the reference to the port. Wish I could have had mine that long
Dave0 -
Kimba - StagesFire34 said:John
Sorry about that didn't see the reference to the port. Wish I could have had mine that long
Dave
Hi Kimba,
Sorry you guys ended up hear but now you're here, you will get lots' of support. I had SCC of the left tonsil diagnosed last August 2009 and I finished treatments Oct 7th 2009. I had surgery to remove the tumor only through the mouth as the 2 lymphs did not appear as mets but more as being inflamed. (The reading was 1.8 from the PET /CT and they usually say mets read 2+).
After surgery, I started Erbitux (Target Chemo - 8 rounds 1 x per week) and I had 7 weeks of IMRT (Intensity modulated Radiation Therapy). Using IMRT meant 2 Rad sessions per day as it a different approach and said to be more accurate and reduces collateral damage as opposed to the older machines. Ask about this if not already done.
I had the PEG in 3 weeks into treatment from too much weight loss. Recommend you do it before. I didn't get a port but was given a PICC which went bad and was removed. I had a rough run and was hospitalized and had an IV for fluids to hydrate and to get some of the pain meds in. Needles were a pain but I got through.
Doing well now. Focused a lot on nutrition and supplements. See my 'expressions' if you are interested in what I took/take and for more of the story (click on my name/photo to get there).
Important thing to know is this can be beaten and a good life can return. It can be a bumpy road but worth the effort.
All the best to you and your boyfriend.
Scambuster0 -
TNM?Scambuster said:Kimba - Stages
Hi Kimba,
Sorry you guys ended up hear but now you're here, you will get lots' of support. I had SCC of the left tonsil diagnosed last August 2009 and I finished treatments Oct 7th 2009. I had surgery to remove the tumor only through the mouth as the 2 lymphs did not appear as mets but more as being inflamed. (The reading was 1.8 from the PET /CT and they usually say mets read 2+).
After surgery, I started Erbitux (Target Chemo - 8 rounds 1 x per week) and I had 7 weeks of IMRT (Intensity modulated Radiation Therapy). Using IMRT meant 2 Rad sessions per day as it a different approach and said to be more accurate and reduces collateral damage as opposed to the older machines. Ask about this if not already done.
I had the PEG in 3 weeks into treatment from too much weight loss. Recommend you do it before. I didn't get a port but was given a PICC which went bad and was removed. I had a rough run and was hospitalized and had an IV for fluids to hydrate and to get some of the pain meds in. Needles were a pain but I got through.
Doing well now. Focused a lot on nutrition and supplements. See my 'expressions' if you are interested in what I took/take and for more of the story (click on my name/photo to get there).
Important thing to know is this can be beaten and a good life can return. It can be a bumpy road but worth the effort.
All the best to you and your boyfriend.
Scambuster
Scambuster,
I welcome your knowledge and your story. The fact that your overall treatment was only 2 months is hopeful, and that your diagnosis is similiar to Mark's. As far at the PET, I do not yet know what the numbers you shared mean. I know in the TNM stages you want your M=0. Do the numbers 1.8 or 2+ mean M=1?
Friday is Mark's PET. It would be very helpful to know whether people on these boards were 0s or 1s. We, of course, and praying for a 0.
I will consult your nutritional information...and Mick gave the address to his Blog where his wife also shared her experience, when I am ready for that I will eagerly seek that informaiton.
Mark cannot understand yet the need to eat more. He asks that I be the information gatherer and share it with him. He has not been here on ACS yet, but General ENT said, EAT. I will start him on nutritional milkshakes tonight with his favorite icecream, Bryer's vanilla.
Thank you for your encouragement and your perspective that there is the other side of this battle. I am very happy to hear you are doing so well.
Kim0 -
Eating MoreKimba1505 said:TNM?
Scambuster,
I welcome your knowledge and your story. The fact that your overall treatment was only 2 months is hopeful, and that your diagnosis is similiar to Mark's. As far at the PET, I do not yet know what the numbers you shared mean. I know in the TNM stages you want your M=0. Do the numbers 1.8 or 2+ mean M=1?
Friday is Mark's PET. It would be very helpful to know whether people on these boards were 0s or 1s. We, of course, and praying for a 0.
I will consult your nutritional information...and Mick gave the address to his Blog where his wife also shared her experience, when I am ready for that I will eagerly seek that informaiton.
Mark cannot understand yet the need to eat more. He asks that I be the information gatherer and share it with him. He has not been here on ACS yet, but General ENT said, EAT. I will start him on nutritional milkshakes tonight with his favorite icecream, Bryer's vanilla.
Thank you for your encouragement and your perspective that there is the other side of this battle. I am very happy to hear you are doing so well.
Kim
Kim
Sure wish I had known ealier about eating more. When I started my chemo I was fatigued and never had much of an appetite. Like Scam I was also on Erbitux, but also Taxol & Carboplatin.
Then 5FU & Hydroxyurea during concurrent chem/rad.
I did not have any pre treatment PET scans just numerous CT scans, so I cant be of much help with the numbering system either.
Maybe in his milkshakes add some protein powder or carnation instant breakfast to increase the calories. Again Best Wishes & Prayers
Dave0 -
EatingKimba1505 said:TNM?
Scambuster,
I welcome your knowledge and your story. The fact that your overall treatment was only 2 months is hopeful, and that your diagnosis is similiar to Mark's. As far at the PET, I do not yet know what the numbers you shared mean. I know in the TNM stages you want your M=0. Do the numbers 1.8 or 2+ mean M=1?
Friday is Mark's PET. It would be very helpful to know whether people on these boards were 0s or 1s. We, of course, and praying for a 0.
I will consult your nutritional information...and Mick gave the address to his Blog where his wife also shared her experience, when I am ready for that I will eagerly seek that informaiton.
Mark cannot understand yet the need to eat more. He asks that I be the information gatherer and share it with him. He has not been here on ACS yet, but General ENT said, EAT. I will start him on nutritional milkshakes tonight with his favorite icecream, Bryer's vanilla.
Thank you for your encouragement and your perspective that there is the other side of this battle. I am very happy to hear you are doing so well.
Kim
You must impress upon Mark how critical the getting of good nutrition with substantial calories is, Kim. The way he can best deal with the treatment, and recover- NUTRITION. Hondo and Scam are the authorities on good eats, but Joe and others certainly do know more than I- the chef-style salad w/orange French dressing freak. The PEG= excellent having it in place before the treatment starts. Ensure is good stuff, and PEG-friendly.
I got no clue about Pet numbers. I just got my 1-year, which is my 3rd Pet, and nobody ever gave me any numbers. It was either possibly shows, or doesn't- that's the only info given me by my Drs. As for the Pet, there is a thread with that as it's Title. The purpose of the Pet is to see what areas the C possibly are in, possibly find the Primary, and that will help the Drs. formulate his treatment. The fact you are going to a major med center= very good. My team is tied to the U of Iowa, which is supposed to be a top H&N center.
Kim and Mark- a lot will depend on the specifics of the C&R delivery, and the state of the C w/Mark, as far as how rough this gets. I am going to be very interested in those specifics, because of my chemo delivery. If he does get my delivery, there are a couple of critical issues I will advise you about- but you must let me/us know what the C&R delivery schedule will be ASAP. Will be able to help- to avoid what I had to learn the hard way. And please let us know of the Pet results w/specifics ASAP. Know we will all be thinking of you two come Friday, and beyond.
This is an historic time for you two, Kim- not just for Mark. Your role in this will be a major one. Stay positive, girl- Mark will survive, and you two will share many more grand years together.
Believe
kcass0 -
FDG Uptake corresponds to the numberKimba1505 said:TNM?
Scambuster,
I welcome your knowledge and your story. The fact that your overall treatment was only 2 months is hopeful, and that your diagnosis is similiar to Mark's. As far at the PET, I do not yet know what the numbers you shared mean. I know in the TNM stages you want your M=0. Do the numbers 1.8 or 2+ mean M=1?
Friday is Mark's PET. It would be very helpful to know whether people on these boards were 0s or 1s. We, of course, and praying for a 0.
I will consult your nutritional information...and Mick gave the address to his Blog where his wife also shared her experience, when I am ready for that I will eagerly seek that informaiton.
Mark cannot understand yet the need to eat more. He asks that I be the information gatherer and share it with him. He has not been here on ACS yet, but General ENT said, EAT. I will start him on nutritional milkshakes tonight with his favorite icecream, Bryer's vanilla.
Thank you for your encouragement and your perspective that there is the other side of this battle. I am very happy to hear you are doing so well.
Kim
Hi Kim,
Sorry for any confusion. Assuming your doctors use the same technique as mine (I had mine done in Hong Kong) the number is a measure of the uptake of the FDG (the radio-active glucose or Fluoro-D-Glucose) which is injected into your body immediately before the scan is done.
Because of the nature of Cancer cells, they suck up the sugar faster than normal cells so any collection of Cancer cells is differentiated from 'normal cells' by the 'uptake' of the FDG. Hence they 'light up' on the PET/CT. From this, they derive the number. From my understanding, if the number is over 2.0 this would indicate the cells/mass is live cancer. Under 2.0 can indicate inflammation as often occurs in the lymph nodes nearest to a cancerous tumor. This is because cancer cells die off (like any cells) and are eliminated by the body via the Lymphatic System.
If the dead cancer cells collect in the lymph node, they can light up to some degree. I am unsure exactly how this works with the dead cells being able to take up the glucose but that is what I recall hearing from my doctors. So, if they're dead, no worries, if they are alive, it can and usually does mean that the live cells have collected in the lymph node. This is not good and that is how cancer can spread through the body, as it can then start to take hold and grow at any lymph node to where it has spread. That process is call Metastasis. Many of the people here have had 'mets' show up in some nodes leading away from the primary tumor, and usually need to get those points irradiated or removed by surgery.
If you can visualize - your Lymphatic System like a long string of loosely strung pearls but the network goes all over your body. The pearls are the lymph nodes.
While this explanation may be slightly flawed, it should give you a bit better idea of the numbers and how the scan works to find the 'C'. I hope you get low scores on this test.
Cheers
SB
PS Definitely get Mark to get some big time protein shakes going and high calories (pref not sugars...) into him to build up some reserves. While not guaranteed, most of us suffered from not being able to eat for a long while or at least had difficulty. You may want to also start some reading on 'Cancer free diet' information as you may wish to make some lifestyle changes now and in the future. Plenty of info online.0 -
tonsil cancer
Hello, My name is David and am almost 6 months post treatment please be patient and follow all your doctors advise. 23 rad and 23 chemo and they litterally burnt my tonsils out and all i do is worry not a good thing as i was told to give it aat least a year for some things to heal not all. Please listen tp ypur body and not your head as it is truly a whole new way of life.. good luck and god bless you both and e-mail me any time at davidowe53@yahoo.com0 -
No Feeding TubeKimba1505 said:Port
John,
Thanks for the details on the port. Did you have a feeding tube too? Both of these things seem to be very useful and set up early on. They also seem to be a little science finctiony to me too. Our eyes will be open to a new world of medical technology. At University of Penn, they have new robotic surgery. Not everyone is a candidate...but if you are it eliminates some surgical incisions...not to mention the precision. Next week involves 3 days of medical testing. Next week we will know a lot more. I hope it is best possible news from this point on.
Thanks for your knowledge and support. It helps me talk to the doctors, which helps Mark not have to.
Kimba,
I didn't have the feeding tube, my doctors felt that I wasn't so thin as to lose that much weight. I am 6' and weight was 275#, so I was generously nourished going in, LOL.
I lost around 35# total during my treatment. Seven weeks of the treatment (last few of radiation weeks, then a few post radiation weeks) were mainly survived on Ensure Plus, water and a few sliced peaches (DelMonte Jarred) with pain meds before drinking.
My doctors were fairly aggressive as I didn't have any other health issues. I had SCC STG III tonsils with one lymphnode involved as a secondary.
Nine weeks of Chemo in three week cycles (Cisplaten, Taxotere and 5FU), then seven weeks concurrent (Carboplaten every Monday and radiation 35 days (M-F)) with Amifostine before each radiation dose.
I was more frightened of my second PET scan more so than the first. I felt at least I'll know where everything is and they can figure out how to fight it. It only lit up at the tonsil site and the lymphnode.
My next PET was a few months post treatment, nothing lit up (great relief). The tumor (lymphnode) actually dissolved and was gone. That was a huge releif as well since that saved me having a neck dissection.
Next PET is in August, if all is well, the port will come out February 2011.
There is a huge information base here for you, glad that we can offer each of our experiences for you and yours to draw upon.
Fire34,
No worries....my port is actually called a power port I think. Anyways it works both ways and for everything. They administered the Chemo and everything else through it. They can also draw blood samples from it if needed. I usually just have blood drawn through the vein though as it only takes a second and my veins are good.
John0 -
How are things going?Kimba1505 said:TNM?
Scambuster,
I welcome your knowledge and your story. The fact that your overall treatment was only 2 months is hopeful, and that your diagnosis is similiar to Mark's. As far at the PET, I do not yet know what the numbers you shared mean. I know in the TNM stages you want your M=0. Do the numbers 1.8 or 2+ mean M=1?
Friday is Mark's PET. It would be very helpful to know whether people on these boards were 0s or 1s. We, of course, and praying for a 0.
I will consult your nutritional information...and Mick gave the address to his Blog where his wife also shared her experience, when I am ready for that I will eagerly seek that informaiton.
Mark cannot understand yet the need to eat more. He asks that I be the information gatherer and share it with him. He has not been here on ACS yet, but General ENT said, EAT. I will start him on nutritional milkshakes tonight with his favorite icecream, Bryer's vanilla.
Thank you for your encouragement and your perspective that there is the other side of this battle. I am very happy to hear you are doing so well.
Kim
Hi Kim,
My sister, Sandy is being treated at University of Penn. She was hopeing for the robotic but did not qualify. Please keep us posted on what is happening. The feeding tube has been a good thing for her. She has lost about 35 lbs. since this has all begun. She is in week 2 of chemo/radiation and has gotten to the point she can not take anything by mouth other than pure liquid. This will pass. She is looking forward to milkshakes and applesause as her throat heals a bit more "again".
Let us know how the PET went and whether he is a candidate for the robotic. Sandy's surgeon there is O'Malley, his partner is Weinstein. I hear they are both fantastic. The entire team is fantastic. She really cares for her radio/oncology team, her speech therapist..... Penn seems to have a very caring group of specialists ready to help you all the way through this.
Take care!0 -
PortSkiffin16 said:No Feeding Tube
Kimba,
I didn't have the feeding tube, my doctors felt that I wasn't so thin as to lose that much weight. I am 6' and weight was 275#, so I was generously nourished going in, LOL.
I lost around 35# total during my treatment. Seven weeks of the treatment (last few of radiation weeks, then a few post radiation weeks) were mainly survived on Ensure Plus, water and a few sliced peaches (DelMonte Jarred) with pain meds before drinking.
My doctors were fairly aggressive as I didn't have any other health issues. I had SCC STG III tonsils with one lymphnode involved as a secondary.
Nine weeks of Chemo in three week cycles (Cisplaten, Taxotere and 5FU), then seven weeks concurrent (Carboplaten every Monday and radiation 35 days (M-F)) with Amifostine before each radiation dose.
I was more frightened of my second PET scan more so than the first. I felt at least I'll know where everything is and they can figure out how to fight it. It only lit up at the tonsil site and the lymphnode.
My next PET was a few months post treatment, nothing lit up (great relief). The tumor (lymphnode) actually dissolved and was gone. That was a huge releif as well since that saved me having a neck dissection.
Next PET is in August, if all is well, the port will come out February 2011.
There is a huge information base here for you, glad that we can offer each of our experiences for you and yours to draw upon.
Fire34,
No worries....my port is actually called a power port I think. Anyways it works both ways and for everything. They administered the Chemo and everything else through it. They can also draw blood samples from it if needed. I usually just have blood drawn through the vein though as it only takes a second and my veins are good.
John
Yes- mine is called a Power Port. Best not to look at the needle used w/flushing, though the pain of it all is no big deal. Got because of the Chemo pumps, and was used during all of my hospital stay w/antibiotic drips, etc. Was told, initially, that the standard for a Port is to be kept for 3-years, which leaves mine in until early-Feb/2012. Last Oto visit, he said it might be good just to keep it very long-term. It isn't a hassle, physically, other than the monthly trips to the hospital for a $135 flushing, which I mentioned to my Oto. But, you know, I'm thinking about it, now, and being of 55 1/2-years, and a C survivor, as long as it's in there and functional: could be that down the road the danged thing might come-in handy as having in case of even a surgery, or other med problem, non-C related. Just might not be a bad thing to keep for as long as I can.
Thus, a question: anybody have a Port for at least 5-years? Or longer?
My next PET is in October, John. Will be my 4th. My experience that each PET gets tougher to emotionally deal with, as the farther away from treatment it seems the greater likelihood of another fight. Still, my last PET, a full year after the last rad, was cleaner than the second PET, only 3-months after that last rad, so I reckon it just is as it is. As always, John
Believe
kcass0 -
New topic for updatebfisher5560 said:How are things going?
Hi Kim,
My sister, Sandy is being treated at University of Penn. She was hopeing for the robotic but did not qualify. Please keep us posted on what is happening. The feeding tube has been a good thing for her. She has lost about 35 lbs. since this has all begun. She is in week 2 of chemo/radiation and has gotten to the point she can not take anything by mouth other than pure liquid. This will pass. She is looking forward to milkshakes and applesause as her throat heals a bit more "again".
Let us know how the PET went and whether he is a candidate for the robotic. Sandy's surgeon there is O'Malley, his partner is Weinstein. I hear they are both fantastic. The entire team is fantastic. She really cares for her radio/oncology team, her speech therapist..... Penn seems to have a very caring group of specialists ready to help you all the way through this.
Take care!
I am truely blessed by these boards and all of your experience and advice. I feel like I soak it up like and sponge and use it when meeting with the doctors or talking with Mark. I will follow this treatment team's advice. bfisher, Mark's doctor is Weinstein and I immediately felt very good about him. Mark is not a shoe in for the robotics, we go to plan B with more radiation/chemo and less surgery.
I have posted a new topic, in that we are entering into a new phase: out of diagnostic and into treatment.
All trouble shooting input and greatly welcome, from magic mouthwash to high protien liquids; from ports to PEGs, the more I know the better I help my man.0 -
PortKent Cass said:Port
Yes- mine is called a Power Port. Best not to look at the needle used w/flushing, though the pain of it all is no big deal. Got because of the Chemo pumps, and was used during all of my hospital stay w/antibiotic drips, etc. Was told, initially, that the standard for a Port is to be kept for 3-years, which leaves mine in until early-Feb/2012. Last Oto visit, he said it might be good just to keep it very long-term. It isn't a hassle, physically, other than the monthly trips to the hospital for a $135 flushing, which I mentioned to my Oto. But, you know, I'm thinking about it, now, and being of 55 1/2-years, and a C survivor, as long as it's in there and functional: could be that down the road the danged thing might come-in handy as having in case of even a surgery, or other med problem, non-C related. Just might not be a bad thing to keep for as long as I can.
Thus, a question: anybody have a Port for at least 5-years? Or longer?
My next PET is in October, John. Will be my 4th. My experience that each PET gets tougher to emotionally deal with, as the farther away from treatment it seems the greater likelihood of another fight. Still, my last PET, a full year after the last rad, was cleaner than the second PET, only 3-months after that last rad, so I reckon it just is as it is. As always, John
Believe
kcass
I have a friend who is a 3X breast cancer survivor. She has a permanent port on the side of her arm, near the torso. I totally agree - it took me a while to get used to my port, put in on the right side of my collar bone, but now think it is the greatest thing ever. The nurses at my clinic also prefer a port over a PICC line. I never looked at the needle that goes into the port, but my boyfriend got one and I watched his being accessed. The needle looked something like a finishing nail. It is also interesting how you get de-ported after treatment. They just kind of snap off. Amazing what they can do now days!
Sharon0 -
Port RemovalFlakey_Flake said:Port
I have a friend who is a 3X breast cancer survivor. She has a permanent port on the side of her arm, near the torso. I totally agree - it took me a while to get used to my port, put in on the right side of my collar bone, but now think it is the greatest thing ever. The nurses at my clinic also prefer a port over a PICC line. I never looked at the needle that goes into the port, but my boyfriend got one and I watched his being accessed. The needle looked something like a finishing nail. It is also interesting how you get de-ported after treatment. They just kind of snap off. Amazing what they can do now days!
Sharon
Hi Sharon,
Not sure of the specifics on the port you speak of, but mine is surgically implanted under the skin. I'd presume they'd need to perform a similar operation to remove it. It has a tube on the back of it that runs directly into an artery I believe.
Unless you are speaking of removing the pin that the use for injecting meds/etcs into you via the port.
JG0 -
My husband will soon be
My husband will soon be celebrating his 2 yr mark with SCC in the left tonsil. Just a few things I found very helpful as many days will be a blur with treatments/appts/labs etc. I got a daily planner that I kept with me at all times. All apts,treatment times were kept there. I also made sure to keep several business cards from each health professional we dealt with - it was nice to just be able to hand the next dr the previous drs card and not try to remember phone numbers etc. I also used my planner to record his lab results and his weight and also our mileage for tax purposes. I would also suggest you make note of each dr's nurse as they will be your initial contact if you have any questions or problems arise. We did get a port which he used for his chemo treatments and for labs-it made it much easier on his veins. We also had a feeding tube which I would highly recommend - it was used for nutrition as well as for meds; my husband lost nearly 50 pounds which he really didn't have to lose to begin with. Make sure you also have a strong relationship with your pharmacist - often meds were changed every few days due to increased pain - near the end of his treatments all of his meds had to be in liquid form as he could not swallow pills.
I can not agree more with others here who have told you this website will be one of great information! I did not discover this site until after treatments were finished. It is reassuring to know that some of the things you will experience as a caregiver and the patient are normal. I check this site regularly and still find information that is very helpful.It helps to hear from others who have walked this same path. This is a nasty disease but with the strength of family/friends and those you meet here you BOTH will be stronger!
Best of luck!0 -
Yeskkw62 said:My husband will soon be
My husband will soon be celebrating his 2 yr mark with SCC in the left tonsil. Just a few things I found very helpful as many days will be a blur with treatments/appts/labs etc. I got a daily planner that I kept with me at all times. All apts,treatment times were kept there. I also made sure to keep several business cards from each health professional we dealt with - it was nice to just be able to hand the next dr the previous drs card and not try to remember phone numbers etc. I also used my planner to record his lab results and his weight and also our mileage for tax purposes. I would also suggest you make note of each dr's nurse as they will be your initial contact if you have any questions or problems arise. We did get a port which he used for his chemo treatments and for labs-it made it much easier on his veins. We also had a feeding tube which I would highly recommend - it was used for nutrition as well as for meds; my husband lost nearly 50 pounds which he really didn't have to lose to begin with. Make sure you also have a strong relationship with your pharmacist - often meds were changed every few days due to increased pain - near the end of his treatments all of his meds had to be in liquid form as he could not swallow pills.
I can not agree more with others here who have told you this website will be one of great information! I did not discover this site until after treatments were finished. It is reassuring to know that some of the things you will experience as a caregiver and the patient are normal. I check this site regularly and still find information that is very helpful.It helps to hear from others who have walked this same path. This is a nasty disease but with the strength of family/friends and those you meet here you BOTH will be stronger!
Best of luck!
Sharon: "Finishing nail," is a good description.
kkw62- 2-years! Yes!!! And, yes to the tube and Port, which I also got/still have. Everything in your post is right-on, and a real experience many of us have shared. Thank you. Would like to hear of any lasting side-effects your husband is still dealing with. Like John, my Port, which has been called a Power Port, is under the skin and spliced to a vein or artery in my upper-left chest in the heart area. As for removal- got no intentions on getting it out any time soon, but do know a surgery will be required for removal. Do not think Sharon's friend has a Power Port- a little too bulky for the arm to handle.
kcass0 -
You asked about continuedKent Cass said:Yes
Sharon: "Finishing nail," is a good description.
kkw62- 2-years! Yes!!! And, yes to the tube and Port, which I also got/still have. Everything in your post is right-on, and a real experience many of us have shared. Thank you. Would like to hear of any lasting side-effects your husband is still dealing with. Like John, my Port, which has been called a Power Port, is under the skin and spliced to a vein or artery in my upper-left chest in the heart area. As for removal- got no intentions on getting it out any time soon, but do know a surgery will be required for removal. Do not think Sharon's friend has a Power Port- a little too bulky for the arm to handle.
kcass
You asked about continued side effects - there are several but considering what the other option could easily be, we'll take these. Continued salvia trouble - he does take an RX and that has helped but not where it was before the salvia glands were destroyed. Still has weight issues although he eats very well considering his throat doesn't always work the best. Swallowing certain things continues to be an issue - such as beef. We eat a lot of chicken and fish now - those items he can easily swallow. He uses gravy or baked beans with the sauce when he wants to try beef or pork. He has some vision issues but nothing that a set of prescription reading glasses at this time won't fix - he's never needed glasses before - but then it may be nothing more than age and not treatments. He has had some dental issues and recently completed 20 hyperbaric treatments, had 4 teeth removed followed by 10 addtional hyperbaric treatments. Recent checkup with dental surgeon felt healing was improved in the jawbone area and the mouth floor. The hardest issue for him and others around him is the hearing. He has had significant hearing loss due to cisplatin used for his chemo treatments. It is very difficult for him to hear in a crowded room or resturant, very hard for him to hear a conversation on the telephone or his cell, very hard for him to hear the tv or even to just carry on a conversation with him. It is easier if you face him when trying to talk to him but that is not always remembered. He did have a hearing test with his ENT but will not agree to get hearing aids - we have had two different apts scheduled and he will back out at the last minute.
We wish everyone dealing with this disease courage, faith and strength - always remember God never gives us more than we can handle although there may be days when you wonder what you did to piss the man upstairs off.0 -
kkw62kkw62 said:You asked about continued
You asked about continued side effects - there are several but considering what the other option could easily be, we'll take these. Continued salvia trouble - he does take an RX and that has helped but not where it was before the salvia glands were destroyed. Still has weight issues although he eats very well considering his throat doesn't always work the best. Swallowing certain things continues to be an issue - such as beef. We eat a lot of chicken and fish now - those items he can easily swallow. He uses gravy or baked beans with the sauce when he wants to try beef or pork. He has some vision issues but nothing that a set of prescription reading glasses at this time won't fix - he's never needed glasses before - but then it may be nothing more than age and not treatments. He has had some dental issues and recently completed 20 hyperbaric treatments, had 4 teeth removed followed by 10 addtional hyperbaric treatments. Recent checkup with dental surgeon felt healing was improved in the jawbone area and the mouth floor. The hardest issue for him and others around him is the hearing. He has had significant hearing loss due to cisplatin used for his chemo treatments. It is very difficult for him to hear in a crowded room or resturant, very hard for him to hear a conversation on the telephone or his cell, very hard for him to hear the tv or even to just carry on a conversation with him. It is easier if you face him when trying to talk to him but that is not always remembered. He did have a hearing test with his ENT but will not agree to get hearing aids - we have had two different apts scheduled and he will back out at the last minute.
We wish everyone dealing with this disease courage, faith and strength - always remember God never gives us more than we can handle although there may be days when you wonder what you did to piss the man upstairs off.
Reckon I've been lucky with the hearing-loss, as I have had none. The saliva and teeth thing seem to be typical with NPC, tonsil, and tongue, and I can include myself in that club. But TWO-YEARS= I do plan on getting there, but got a ways to go. As for the hearing aids- if one can afford it, and it does improve the quality of life at minimal discomfort, it does seem a logical path to take. Hope you can talk him into it.
kcass0 -
hey kim welcome!
you have gotten lots of great advice so far. I wish I found this site before I went thru treatment.
I am a stage 4 SCC with unknown primary survivor. I have a rare genetic blood disorder, Fanconis Anemia. Apparently those of us that live long enough and escape dying early can end up with HNC.
I wish your partner only the very best, and he is very lucky to have your support.
~~~~sweet0 -
Cold and tiredsportsman said:Newly Diagnosed
Kimba: This will be a journey and unfortunately a very long one. I am just past the three year mark now since completing radiation and chemo for throat cancer. Yes I was a completely healthy and in great shape fifty eight year old when I was diagnosed. I thought I would beat this thing and come out on the other side just like I was. After three years out of treatment now my quality of life is still not what I expected and I have experienced many problems. Swallowing, tooth decay, not being able to gain weight or muscle mass, being cold, being tired are just some of the problems I have experienced. I went in to this not knowing anything about throat cancer and certainly not about the severity of treatment. I could go on and on about this but let me suggest this. Find out all you can, get the best doctors available to you and be prepared to fight a battle for your life. You will read many stories on this site as to how everyone is different so far as how they come out of treatment. Radiation and chemo has different effects on people. I think according to my doctor that I may have got the worst possible results. Everyday is a struggle and the thing that keeps me going is that I am here to live another day to be with my loved ones and friends. I pray that God will give you partner the strength they need to fight and survive. Fight hard and don't give up. God Bless
Hi Sportsman,
THis post caught my eye. We are new this. Hubby just had neck dissection and Radiation yet to come. Our doc did mention that Radiation can kill your thyroid gland. He will have to have thyroid checks every three months after radiation. Have you had your thyroid levels checked? (I have thyroid issues, and cold and tired are very familiar to me!
With the right thyroid supplement, I feel fine.
Jen0
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