Tongue & Throat Cancer

nicki74

Pumakitty said:

NICKI74
Hi,

We are in the Winchester, VA area. We are only about 15 minutes from the hospitol. My mine concern is not so much taking him to the treatments, but leaving them to go to work at night. I am not sure how much both physically and mentally my mom can take. I know that I can take some time off work to care for him, but it is limited to 12 weeks. My dad did not want to do the surgery and if he did he would still have to do the chemo and rads after. How much did they tell you about how bad the side effects would be. And when they would start. They have never mentioned induction chemo to us at this point. Why do they do this.

PumaKitty
Induction chemo has been shown to sometimes shrink the size of the tumor, before they start the actual treatments.... the cure rate if he did have the surgery was only about 10 percent more than if he did the chemo/rads, so it just wasnt worth it and even the team of doctors said they wouldnt do it, but i think as doctors they have to give you all your options.. what hospital will your dad be treated at? did you get a second opinion?

ask questions for sure! that's why they are paid the big bucks! write your questions down.. i call the doctor's assistant at least 4xs a week! haha..

Cathy, I am happy to hear that Tim is coming around... he has definitely came a longg way! He is lucky to have you by his side..

xoxo
nicki

Fire34

catya88 said:

Update on Tim
Tim continues to do well eating. He's dissapointed he hasn't gained much weight back but he's eating as much as his stomach will allow. He still does one can in the morning.

Kent, his visit with the radiologist went wonderful, the doctor was so giddy after looking at his throat, he told Tim, you were such a mess when you got here, I can not believe how clean your throat is! Still, his PET Scan is April 12 and then follow up with the ENT an radiologist the following week. I know we still have more road to journey down.

His fatigue comes and goes but he's upset that he doesn't seem to have much energy, any thoughts on that? Anyone??

PumaKitty, my boyfriend was diagnosed back in December with stage iv BOT and throat cancer. Read everything you can and ask lots of questions with this group, they have been so helpful and supportive to me. Thanks to this group, I knew about the magic mouthwash before Tim needed it and I knew about the mucas, yuck! The papya juice really helped with that. TIm's worst pain didn't hit until 3 days after treatment but remember, everyone is different.

Nicki good to hear about your dad. As you've read Tim is up and down with fatigue and he's finished treatment!

Love to all - Cathy

Fatigue
Cathy
I finished on Nov. 30th was my last chemo day. I was fatigued/tired most of the time for the next month and a half. Up until approx the middle of January.
I lost 30 lbs and dont know if I ever will gain it all back or if I even want to. I have only gained back about 5 of the 30. I feel pretty good and am eating alright. Still no taste buds or saliva which they say may never come back. Best Wishes
Dave

thegirlfriend

catya88 said:

Update on Tim
Tim continues to do well eating. He's dissapointed he hasn't gained much weight back but he's eating as much as his stomach will allow. He still does one can in the morning.

Kent, his visit with the radiologist went wonderful, the doctor was so giddy after looking at his throat, he told Tim, you were such a mess when you got here, I can not believe how clean your throat is! Still, his PET Scan is April 12 and then follow up with the ENT an radiologist the following week. I know we still have more road to journey down.

His fatigue comes and goes but he's upset that he doesn't seem to have much energy, any thoughts on that? Anyone??

PumaKitty, my boyfriend was diagnosed back in December with stage iv BOT and throat cancer. Read everything you can and ask lots of questions with this group, they have been so helpful and supportive to me. Thanks to this group, I knew about the magic mouthwash before Tim needed it and I knew about the mucas, yuck! The papya juice really helped with that. TIm's worst pain didn't hit until 3 days after treatment but remember, everyone is different.

Nicki good to hear about your dad. As you've read Tim is up and down with fatigue and he's finished treatment!

Love to all - Cathy

weird
catya88

your name is Cathy and your boyfriend was diagnosed with H&N cancer just like mine.
Mine diagnosed Aug 09. finished treatment 22 weeks ago. still has alot of fatigue, but i think a good part of that is that he isnt able to eat solid food yet. too hard to get it down with no saliva. has the thrush still, very very stubborn to get rid of. havent kissed him since before treatment.
tell me about the papaya juice though. was that for the mucous?

Kathy

Scambuster

catya88 said:

Update on Tim
Tim continues to do well eating. He's dissapointed he hasn't gained much weight back but he's eating as much as his stomach will allow. He still does one can in the morning.

Kent, his visit with the radiologist went wonderful, the doctor was so giddy after looking at his throat, he told Tim, you were such a mess when you got here, I can not believe how clean your throat is! Still, his PET Scan is April 12 and then follow up with the ENT an radiologist the following week. I know we still have more road to journey down.

His fatigue comes and goes but he's upset that he doesn't seem to have much energy, any thoughts on that? Anyone??

PumaKitty, my boyfriend was diagnosed back in December with stage iv BOT and throat cancer. Read everything you can and ask lots of questions with this group, they have been so helpful and supportive to me. Thanks to this group, I knew about the magic mouthwash before Tim needed it and I knew about the mucas, yuck! The papya juice really helped with that. TIm's worst pain didn't hit until 3 days after treatment but remember, everyone is different.

Nicki good to hear about your dad. As you've read Tim is up and down with fatigue and he's finished treatment!

Love to all - Cathy

Fatigue Fix
Hi Cathy,

Glad to hear Tim is doing OK considering. I suffered Chronic Fatigue years back so I understand the problem of fatigue and I too was also wiped out during and after my treatment for a good while. I was off work till early February (last rads Oct 7 2009). I was hospitalized for much of my treatment period and readmitted for 10 days after. Not a fun time.

Since I could start swallowing again, I have religiously taken a bunch of supplements and vitamins and a Vitashake every day. I am also fairly careful with my diet.

I also have the dry mouth and eating difficulties but I seem to be continually improving. Of note here is that I actually think my energy is now as good or better than Pre 'C'. I have lost the 40+ lbs (from ~210lb to ~165lb now) which is probably a good thing and I can't seem to gain it back but my new weight is actually OK now.

On the Saliva deal, I started acupunture a few weeks ago and I also take Echinacea (Flower/plant extract) every day to try to revitalize my salivary glands. It tastes awful so I only take 1 teaspoon in a glass of water every morning. I have noticed that I get some saliva now (when I keep my mouth closed) so hopefully that will continue and improve.

If you click on my name and go to the 'Expressions', I have listed out all the supplements I take. I do consult with Naturopaths who I believe have helped me a lot through all this.

I would suggest you search / google /wiki the supplements listed so you are informed what they do. The majority are anti-oxidants, and support for liver, kidneys and other vital organs that we need to stay well (and recover well). Take it as you will but I have not been sick with a cold or flu since I started this regime while my little kids and wife have all been sick around me over winter. This is a first. I am swimming regularly and doing light gym work now.

Feel free to PM or email me if you want further information. Hope this is of use.

Regds
Scambuster

D Lewis

Pumakitty said:

NICKI74
Hi,

We are in the Winchester, VA area. We are only about 15 minutes from the hospitol. My mine concern is not so much taking him to the treatments, but leaving them to go to work at night. I am not sure how much both physically and mentally my mom can take. I know that I can take some time off work to care for him, but it is limited to 12 weeks. My dad did not want to do the surgery and if he did he would still have to do the chemo and rads after. How much did they tell you about how bad the side effects would be. And when they would start. They have never mentioned induction chemo to us at this point. Why do they do this.

No induction chemo
Hi, Pumakitty;

The treatment regime you get is very dependent upon your cancer. I met with the Tumor Board at the Stanford Cancer Research and Teaching Hospital (California). The doctors there were all in agreement that induction chemo offered no advantage for BOT cancers, and would only result in an increase in side effects without added effectiveness against the disease. The platinoid chemotherapies, Cisplatin and Carboplatin, together with radiation, are truly the gold standard as regards treatment for this type of cancer. There are other cancers that do benefit from induction chemo, and they are so treated.

Actually, your father will likely be fine at home in the evenings with your mother keeping watch. Outside of the radiation and chemo, and keeping myself hydrated and fed; in the evenings, I take a small bit of pain medication to help me sleep, and I'm in bed early. As of yet, I haven't noticed any medical needs arising in the night. Can you make arrangements with your work, so that you could leave in the event of an emergency? Or, stay home for a few hours if he is feeling particularly unwell?

Best of luck to you.

Deb L.

catya88

D Lewis said:

No induction chemo
Hi, Pumakitty;

The treatment regime you get is very dependent upon your cancer. I met with the Tumor Board at the Stanford Cancer Research and Teaching Hospital (California). The doctors there were all in agreement that induction chemo offered no advantage for BOT cancers, and would only result in an increase in side effects without added effectiveness against the disease. The platinoid chemotherapies, Cisplatin and Carboplatin, together with radiation, are truly the gold standard as regards treatment for this type of cancer. There are other cancers that do benefit from induction chemo, and they are so treated.

Actually, your father will likely be fine at home in the evenings with your mother keeping watch. Outside of the radiation and chemo, and keeping myself hydrated and fed; in the evenings, I take a small bit of pain medication to help me sleep, and I'm in bed early. As of yet, I haven't noticed any medical needs arising in the night. Can you make arrangements with your work, so that you could leave in the event of an emergency? Or, stay home for a few hours if he is feeling particularly unwell?

Best of luck to you.

Deb L.

Another Tim Update and question on sores
Hi Everyone

Everytime I try to keep my posts up, I get busy, sorry.

Ok, Pumakitty. I was lucky, Tim's parents actually came down to help out but, during treatment, radiation and chemo, he didn't need any help. He went to treatment and then 8 hours of work. The bad stuff didn't happen until treatment stopped, then I needed his parents. After treatment stopped his fatigue was bad and he was on liquid morphine. His parents stayed for 3 weeks but we could have survived if the only stayed the one week after treatment stopped. Also, I'm in Arlington, VA. I would be happy to meet up with you at anytime.

After treatment stopped his pain got worse, he was in the hospital for a week for pain management and the mucus was at it's worst then also. During treatment, Tim did hydrocodone/ibuprofen and one fentanyl patch. After treatment it was liquid morphine, which he only takes occasionally now.

Tim had 7 weeks of radiation and chemo, same time. Don't know the dosage. He is going to get a completion letter at the next support meeting which will says how much total radiation he got.

Fire34 - Dave - thanks for how you did with the fatigue. Tim finished Feb 7. He's eating better and has only gained back 4 of the 20 he lost and he had no weight to lose! He can taste salt but very little of anything else.

thegirlfriend - Kathy - the papaye juiced worked wonders on Tim's mucus. He used it at the beginning and after about 3 days it had subsided alot. He doesn't need it now. Sorry to hear about the thrush, Tim had that once and was in extreme pain with that.

scambuster - thanks for the tip on vitamines and such. We've been thinking about checking that out.

Nicki - how is your dad? how are you and your mom doing?

New question - Tim has sores on his neck where the radiation burns were the worst, they just appeared last week, not real bad looking. Anyone else had this??

Thanks everyone. I'm praying for all - Cathy

catya88

catya88 said:

Another Tim Update and question on sores
Hi Everyone

Everytime I try to keep my posts up, I get busy, sorry.

Ok, Pumakitty. I was lucky, Tim's parents actually came down to help out but, during treatment, radiation and chemo, he didn't need any help. He went to treatment and then 8 hours of work. The bad stuff didn't happen until treatment stopped, then I needed his parents. After treatment stopped his fatigue was bad and he was on liquid morphine. His parents stayed for 3 weeks but we could have survived if the only stayed the one week after treatment stopped. Also, I'm in Arlington, VA. I would be happy to meet up with you at anytime.

After treatment stopped his pain got worse, he was in the hospital for a week for pain management and the mucus was at it's worst then also. During treatment, Tim did hydrocodone/ibuprofen and one fentanyl patch. After treatment it was liquid morphine, which he only takes occasionally now.

Tim had 7 weeks of radiation and chemo, same time. Don't know the dosage. He is going to get a completion letter at the next support meeting which will says how much total radiation he got.

Fire34 - Dave - thanks for how you did with the fatigue. Tim finished Feb 7. He's eating better and has only gained back 4 of the 20 he lost and he had no weight to lose! He can taste salt but very little of anything else.

thegirlfriend - Kathy - the papaye juiced worked wonders on Tim's mucus. He used it at the beginning and after about 3 days it had subsided alot. He doesn't need it now. Sorry to hear about the thrush, Tim had that once and was in extreme pain with that.

scambuster - thanks for the tip on vitamines and such. We've been thinking about checking that out.

Nicki - how is your dad? how are you and your mom doing?

New question - Tim has sores on his neck where the radiation burns were the worst, they just appeared last week, not real bad looking. Anyone else had this??

Thanks everyone. I'm praying for all - Cathy

Tim's PET Scan
Hi everyone

Tim's ENT called him last night with a preliminary finding on the PET scan. Not good. Two spots on the lung, will have to biopsy before going further. Spoke of splitting his jaw open and having reconstructive surgery on tongue and neck. That surgery is out of his speciality so he will speak to other doctors on his findings.

We go next Tuesday for the full report and findings.

Anyone in the Virginia area with recommendations on doctors for second opinions? Anyone had this type of situation?

Praying for all - Cathy

Pumakitty

nicki74 said:

hi, my father was recently
hi, my father was recently diagnosed with tongue cancer, stage iv.. he goes in next tuesday so the surgeon can put a scope in to get a better look to make sure we havent missed anything, and i pray that we didnt..at that time they will put in a trach and feeding tube.. he is 56 yrs old.. he has already lost about 30lbs, because the tumor under his tongue has been so painful that he could not eat solids, just basically yogurts, protein shakes and drinks... i want to keep him and my mom, and of course myself positive.. does anyone have any thoughts?

about a week after this first stay, he will then go in 5 days a week for 7 weeks for treatment.. the oncologist also said something about starting the induction chemo while he was in the hospital... is anyone also familiar with the induction chemo?

thank you so much for your time.. this website has been great!

Hi
Niki,

How is your father doing?

nicki74

catya88 said:

Tim's PET Scan
Hi everyone

Tim's ENT called him last night with a preliminary finding on the PET scan. Not good. Two spots on the lung, will have to biopsy before going further. Spoke of splitting his jaw open and having reconstructive surgery on tongue and neck. That surgery is out of his speciality so he will speak to other doctors on his findings.

We go next Tuesday for the full report and findings.

Anyone in the Virginia area with recommendations on doctors for second opinions? Anyone had this type of situation?

Praying for all - Cathy

update
cathy, i am so sorry to hear about Tim's PET scan.. i will keep praying for him, and of course you..

we had my dad's follow up appt today, this was his first appointment since the induction chemo started.. he had two rounds of induction chemo, and they said that a 3rd maybe needed.. well, ENT said that his tumor did shrink a great amount, and that its time to start the radiation! yay i took that as good news?.. he is having a hard time with the pain management, as it sounds like Tim did too, he has the patch on, and has been on tylenol with codeine, norco, dilata, liquid morphine, at one time or another..he has a constant headache that he just cant shake..but so far he is doing very well, pretty emotional here and there, and of course moody, but i am assuming that is caused by some of the meds...

i will keep you and tim in my prayers, and please keep us posted with biopsy results..

pumakitty-yes, each individual is different, and what may work for one, may not work for another.. like i said, this has been a great place to come for support and information.. the doctor's are amazed with how much i know and with all my questions, and give me that look of "how did you know that?".. i am grateful for this website.... and every person on here has a different story and has traveled a different journey.. they are true fighters... please keep us informed on your dad's progress..

take care..

nicki

catya88

nicki74 said:

update
cathy, i am so sorry to hear about Tim's PET scan.. i will keep praying for him, and of course you..

we had my dad's follow up appt today, this was his first appointment since the induction chemo started.. he had two rounds of induction chemo, and they said that a 3rd maybe needed.. well, ENT said that his tumor did shrink a great amount, and that its time to start the radiation! yay i took that as good news?.. he is having a hard time with the pain management, as it sounds like Tim did too, he has the patch on, and has been on tylenol with codeine, norco, dilata, liquid morphine, at one time or another..he has a constant headache that he just cant shake..but so far he is doing very well, pretty emotional here and there, and of course moody, but i am assuming that is caused by some of the meds...

i will keep you and tim in my prayers, and please keep us posted with biopsy results..

pumakitty-yes, each individual is different, and what may work for one, may not work for another.. like i said, this has been a great place to come for support and information.. the doctor's are amazed with how much i know and with all my questions, and give me that look of "how did you know that?".. i am grateful for this website.... and every person on here has a different story and has traveled a different journey.. they are true fighters... please keep us informed on your dad's progress..

take care..

nicki

Thanks Nicki
Thanks Nicki, it means alot to me. PumaKitty, I second Nicki's statement, I learned more from this website and the people than anyone else in the support group. I knew about the Magic Muthwash before Tim even needed it. Still, remember what Nicki said, everyone is different and don't assume because one person had a bad time that your dad will too. I filed alot of stuff away for future use.

Nicki, Tim did struggle with the headaches. The doctors always told him that if the pain was too much to call and they took care of him immediately when he did. I know the mood's. Tim didn't get chemo brain but was moody sometimes.

Tim's ENT was happy how his tumor had shrunk but now we don't know what to think. The radiologist said he saw cancer on his jaw bone! but the ENT didn't say that?! We will wait until the appointment next Tuesday when all the cards are on the table and make decisions from there.


Prayers to all - Cathy

nicki74

catya88 said:

Thanks Nicki
Thanks Nicki, it means alot to me. PumaKitty, I second Nicki's statement, I learned more from this website and the people than anyone else in the support group. I knew about the Magic Muthwash before Tim even needed it. Still, remember what Nicki said, everyone is different and don't assume because one person had a bad time that your dad will too. I filed alot of stuff away for future use.

Nicki, Tim did struggle with the headaches. The doctors always told him that if the pain was too much to call and they took care of him immediately when he did. I know the mood's. Tim didn't get chemo brain but was moody sometimes.

Tim's ENT was happy how his tumor had shrunk but now we don't know what to think. The radiologist said he saw cancer on his jaw bone! but the ENT didn't say that?! We will wait until the appointment next Tuesday when all the cards are on the table and make decisions from there.


Prayers to all - Cathy

Cathy
My dad's first visit with the team of doctors was on February 17 of this year, and the radiologist did say that he thought because my dad has some pain in his jaw area, that the Cancer could also be in his mandible.. my mom is constantly on the phone with the doctor trying to find what meds are going to work.. my mom seems to think that some of the pain pills could be contributing to his headache, but unfortunately its just so hard to tell.. they just recently lowered the dosage of the patch, and we are going to see how that works.. he goes in this monday for the simulation and he will then start his radiation the following monday... please keep us posted Cathy AND that feeling of walking into that room not knowing what they are going to say, is horrible but i will be praying for you and Tim, and hope that next Tuesday goes well! take care

nicki

catya88

nicki74 said:

Cathy
My dad's first visit with the team of doctors was on February 17 of this year, and the radiologist did say that he thought because my dad has some pain in his jaw area, that the Cancer could also be in his mandible.. my mom is constantly on the phone with the doctor trying to find what meds are going to work.. my mom seems to think that some of the pain pills could be contributing to his headache, but unfortunately its just so hard to tell.. they just recently lowered the dosage of the patch, and we are going to see how that works.. he goes in this monday for the simulation and he will then start his radiation the following monday... please keep us posted Cathy AND that feeling of walking into that room not knowing what they are going to say, is horrible but i will be praying for you and Tim, and hope that next Tuesday goes well! take care

nicki

Suspense
Hi Nicki

The only thing new is I spoke to Donna, she's the nurse to the radiologist. He couldn't call Tim because he didn't have the scan only the report and wants to see them together to make an informed decision, understandable. She is going to try to get us in to see the radiologist the same day as we see the ENT so that no stone is left unturned on what everyone sees and what treatment, surgery is next.

I'm really scared, Tim and I have been together 8 years, 9 in September. He's such a good, good person and he's also scared, we are both putting on a brave face for each other.

More later - Cathy

Fire34

catya88 said:

Suspense
Hi Nicki

The only thing new is I spoke to Donna, she's the nurse to the radiologist. He couldn't call Tim because he didn't have the scan only the report and wants to see them together to make an informed decision, understandable. She is going to try to get us in to see the radiologist the same day as we see the ENT so that no stone is left unturned on what everyone sees and what treatment, surgery is next.

I'm really scared, Tim and I have been together 8 years, 9 in September. He's such a good, good person and he's also scared, we are both putting on a brave face for each other.

More later - Cathy

Scared
I know what you mean there. My wife and I are of 27 years when I was diagnosed. My cancer was in my lower left neck in the lymph modes. 4 tumors were found. I didnt here you talk of an oncologist, I had two, the meidcal oncolosgist(chemo) and radiation oncologist along with the ENT. My care was coordinated thru all 3.
My wife was also as scared as you are but without her support I would not have made it thru my treatment, even close. You know what they say about when the going gets tough, well I wanted to quit. Being away from my family was the hardest but she kept egging me on to complete my concurrent chemo/rad that I couldnt quit. Keep a positive mental attitude, that helps both of you a great deal.
I am some what perplexed as what is taking so long to begin treatment. I was diagnosed on 7/14/09 and treatment started on 8/3/09. Best wishes and Prayers
Dave

catya88

Fire34 said:

Scared
I know what you mean there. My wife and I are of 27 years when I was diagnosed. My cancer was in my lower left neck in the lymph modes. 4 tumors were found. I didnt here you talk of an oncologist, I had two, the meidcal oncolosgist(chemo) and radiation oncologist along with the ENT. My care was coordinated thru all 3.
My wife was also as scared as you are but without her support I would not have made it thru my treatment, even close. You know what they say about when the going gets tough, well I wanted to quit. Being away from my family was the hardest but she kept egging me on to complete my concurrent chemo/rad that I couldnt quit. Keep a positive mental attitude, that helps both of you a great deal.
I am some what perplexed as what is taking so long to begin treatment. I was diagnosed on 7/14/09 and treatment started on 8/3/09. Best wishes and Prayers
Dave

Answers for Dave
Hi Dave

Tim finished treatment on Feb 7. This is his first PET Scan since treatment ended. He did 7 weeks of radiation and chemo.

The ENT ordered the PET scan and we are hoping to also meet with radiologist next Tuesday after the ENT gives us his take on the scan and all.

Prayers to all - Cathy

Fire34

catya88 said:

Answers for Dave
Hi Dave

Tim finished treatment on Feb 7. This is his first PET Scan since treatment ended. He did 7 weeks of radiation and chemo.

The ENT ordered the PET scan and we are hoping to also meet with radiologist next Tuesday after the ENT gives us his take on the scan and all.

Prayers to all - Cathy

Cathy
Cathy
Thanks for the reply, sorry for the misunderstanding of your previous posts. Hope all goes well with Tim's PET. I believe it will as mine was negative 2 1/2 months out. Again good luck and best wishes
Dave

catya88

Fire34 said:

Cathy
Cathy
Thanks for the reply, sorry for the misunderstanding of your previous posts. Hope all goes well with Tim's PET. I believe it will as mine was negative 2 1/2 months out. Again good luck and best wishes
Dave

Tim's PET Scan
We met with ALL the doctors todays. The ENT basically said everything but get your affairs in order, I was in tears when we left his office. The radiologist, sat us down and pulled up the scan and reviewed every spot with us. Tim has five new spots, two in the lungs and the rest in the bone. The radiologist and oncologist both said, we need to do a biopsy before we can do a treatment plan, they gave us hope.

Don't have a biopsy date, will know later what the date is. Tim also had an open sore on his neck, that they biopsied today, although no-one was sure if it was skin cancer.

Cathy

micktissue

catya88 said:

Tim's PET Scan
We met with ALL the doctors todays. The ENT basically said everything but get your affairs in order, I was in tears when we left his office. The radiologist, sat us down and pulled up the scan and reviewed every spot with us. Tim has five new spots, two in the lungs and the rest in the bone. The radiologist and oncologist both said, we need to do a biopsy before we can do a treatment plan, they gave us hope.

Don't have a biopsy date, will know later what the date is. Tim also had an open sore on his neck, that they biopsied today, although no-one was sure if it was skin cancer.

Cathy

Cathy
Cathy I'm so sorry to hear about the latest in Tim's health. Did the ENT say why it was so dire? If it is so dire then why to the rad and onco Drs think they can treat? There is a disconnect between the message you get from the ENT and it would be good to know what the prognosis is from all of them.

Warmly,

Mick

catya88

micktissue said:

Cathy
Cathy I'm so sorry to hear about the latest in Tim's health. Did the ENT say why it was so dire? If it is so dire then why to the rad and onco Drs think they can treat? There is a disconnect between the message you get from the ENT and it would be good to know what the prognosis is from all of them.

Warmly,

Mick

Don't know Mick
Hi Mick

Last week the initial diagnosis from the ENT he was talking major radical surgery, cracking the jaw open and such. Tim was a basketcase and I was strong. Today the roles reversed. I don't understand WHY the ENT was the one with the bad outlook but the radiologist and oncologist have a glimmer of hope?? Tim trusts the radiologist/onconlogist more, he felt the ENT was a little a green, I have to agree after today. The radiologist pulled up the PET scan and went over everything with use, showed us the spots.

You'll have to excuse me, I don't remember what I wrote earlier. Tim has 5 spots on his bones and two in his lung.

I'm a little stunned as to why the ENT was so dire, he didn't follow him through treatment like the other two doctors and as far as I know wasn't involved in the initial treatment plan.

I need to research bone cancer and such and see what's out there.

The rad/onco will come up with a plan once they have the biopsy, to determine what type of cancer it is.

We are still taking all this in and trying to figure out questions and such.

More as it comes - Cathy

Fire34

catya88 said:

Don't know Mick
Hi Mick

Last week the initial diagnosis from the ENT he was talking major radical surgery, cracking the jaw open and such. Tim was a basketcase and I was strong. Today the roles reversed. I don't understand WHY the ENT was the one with the bad outlook but the radiologist and oncologist have a glimmer of hope?? Tim trusts the radiologist/onconlogist more, he felt the ENT was a little a green, I have to agree after today. The radiologist pulled up the PET scan and went over everything with use, showed us the spots.

You'll have to excuse me, I don't remember what I wrote earlier. Tim has 5 spots on his bones and two in his lung.

I'm a little stunned as to why the ENT was so dire, he didn't follow him through treatment like the other two doctors and as far as I know wasn't involved in the initial treatment plan.

I need to research bone cancer and such and see what's out there.

The rad/onco will come up with a plan once they have the biopsy, to determine what type of cancer it is.

We are still taking all this in and trying to figure out questions and such.

More as it comes - Cathy

Agree with Mick
Cathy
My care and treatment plan was coordinated thru all three. All three were on the same page. My care was also brought up before ALL the doctors that were in canceer treatment, as they had meetings every Tuesday morning to discuss new and ongoing cases. I too am sorry for the results of the scan. Prayers every night for Tim and evryone on this board having difficulties. Still keep a positive attitude please
Dave

catya88

Fire34 said:

Agree with Mick
Cathy
My care and treatment plan was coordinated thru all three. All three were on the same page. My care was also brought up before ALL the doctors that were in canceer treatment, as they had meetings every Tuesday morning to discuss new and ongoing cases. I too am sorry for the results of the scan. Prayers every night for Tim and evryone on this board having difficulties. Still keep a positive attitude please
Dave

More I don't knows
Well, the bone cancer can be controlled but the ENT didn't speak to the surgery or talking to other specialist about the surgery.

We are still letting things sink in and I got another ENT but Tim wants to wait and talk more to the other ENT, not sure why, but it's his call.

Still waiting on a call to set up the biopsy for the bone and the one they took of the open sore on his neck, might be skin cancer.

Remaining positive and as always appreciate everyone in this group.

Cathy