Husband was diagnosed with stage 4 base of tongue cancer - he is 8 days into treatment

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Husband was diagnosed with stage 4 base of tongue cancer - he is 8 days into treatment

by blessedmimi on Wed Jan 14, 2015 06:31 PM

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My husband was dianosed with stage 4 base of tongue cancer, it has spread to the lymph nodes on that same side of the neck, 3 lymph nodes to be exact.  Dr has started him on Chemo/radiation treatments.  Chemo once every 3 weeks cisplatin and radiation 5 days a week for 7 weeks.  They did not even consider doing surgery and stated that this cancer is 90% cureable with the chemo/radiation alone.. They did say the cancer was caused by HPV virus.  Has anyone been through something similar, I am looking for any help I can get on taking care of him.. He has had 8 radiation treatments and 1 chemo treatment so far, and has only had one bad day of vomiting, but most days there is some nauseau, indigestion, and lots of fatigue... I will greatly appreciate any advice I can get on how best to take care of him.  I know that the coming weeks are going to get pretty rough for him.  He opted out of getting the feeding tube.  Thank you and God bless! 

RE: Husband was diagnosed with stage 4 base of tongue cancer - he is 8 days into treatment

by PopPop on Thu Jan 15, 2015 01:20 AM

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Blessedmimi,

I am sorry that you are here seeking answers to your questions and that you and your husband are traveling this road. This is a good site to find those answers, there are several survivors here that had HPV cancer. I am sure that they will be along to help you soon.

I had Base of Tongue cancer also. I had surgery first to remove part of my tongue, radical neck disection to remove some Lymphnodes followed by Radiation. I did not have Chemo, so I can't speak on that and the side effects.

Yes, your husband will be fatigued during this time and several weeks after his final treatments. We actually feel the full effects then and it is known as "Cooking". He will need to stay hydrated, plenty of fluids and also to keep the swallow motion. He can get the PEG Tube at a later date if he needs it. Several here have done that. I had it right away as I wasn't able to eat orally for some spell.

Ask the Doctors or Nurses about creams for his neck so it doesn't blister, and "Magic Mouthwash" to take the edge off of any discomfort in his mouth during treatments.

As I mentioned earlier, others will be along with suggestions to help you out.

My Best to Both of You and Everyone Here

 

RE: Husband was diagnosed with stage 4 base of tongue cancer - he is 8 days into treatment

by blessedmimi on Thu Jan 15, 2015 03:49 PM

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Thank you so much... I know the swolling will become an issue, trying to be prepared for it.  Adding extra calorie benecalorie to his meals now so that he does not lose weight this early in... He is also drinking extra calorie boost some too. I am adding electrolytes to his water, as he drinks LOTS of water due to dry mouth.  They have him on a presciption Mugard for mouth issues although we are early in so there are no issues yet with that.. I do have a mixture of benadryl, and some other things (can't remember what all) that they also gave us for when he gets any soreness in throat and mouth.  I make him rinse every two hours with water/baking soda/salt mixture.  Brush his teeth several times a day.. Just wondered if I am missing anything, if there is anything I am not doing for him that I can .. any little thing that I can do to help him I want to do it :(  my heart is broken that he is having to go through this.  Thank you again and looking forward to any advice I can get! 

RE: Husband was diagnosed with stage 4 base of tongue cancer - he is 8 days into treatment

by PopPop on Thu Jan 15, 2015 08:10 PM

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Blessedmimi,

I am glad to see that your husband is brushing several times a day. It appears you have most of the bases covered already. The only suggestion I can make at this point is to switch your husband's tooth brush to a very soft one if you haven't already done so.

 As the treatments mount, his mouth will get very tender, almost as tender as a young baby. So we don't need stiff bristles while brushing.

My Best to Both of You and Everyone Here

RE: Husband was diagnosed with stage 4 base of tongue cancer - he is 8 days into treatment

by blessedmimi on Fri Jan 16, 2015 03:27 PM

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Thank you for the info, went and purchased the extra soft toothbrush.  He has been using a soft but will appreciate the extra soft as the treatments progress.

Thanks again and have a BLESSED day!

RE: Husband was diagnosed with stage 4 base of tongue cancer - he is 8 days into treatment

by Welltogetherdud on Tue Jul 14, 2015 11:51 PM

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On Jan 14, 2015 6:31 PM blessedmimi wrote:

My husband was dianosed with stage 4 base of tongue cancer, it has spread to the lymph nodes on that same side of the neck, 3 lymph nodes to be exact.  Dr has started him on Chemo/radiation treatments.  Chemo once every 3 weeks cisplatin and radiation 5 days a week for 7 weeks.  They did not even consider doing surgery and stated that this cancer is 90% cureable with the chemo/radiation alone.. They did say the cancer was caused by HPV virus.  Has anyone been through something similar, I am looking for any help I can get on taking care of him.. He has had 8 radiation treatments and 1 chemo treatment so far, and has only had one bad day of vomiting, but most days there is some nauseau, indigestion, and lots of fatigue... I will greatly appreciate any advice I can get on how best to take care of him.  I know that the coming weeks are going to get pretty rough for him.  He opted out of getting the feeding tube.  Thank you and God bless! 

I, too, was diagnosed with base of stage IV tongue cancer (12 yrs cancer free).  Unfortunately the the massive radiation is now catching up on me also.  I've had to go back on the feeding tube due to aspirating. I now cannot swallow anything, not even my own saliva.  And if that wasn't bad enough, here recently my speech has been affected.  My soft palate is not moving properly making sound nasal and my tongue is not moving well at all.  I've lost almost all of my salivary glands, mouth is extremely dry all the time.  I use a water spray to just moist my mouth throughout the day.  I never knew how I contrated this cancer since I never smoked and seldom drank but after reading your note about possible HPV virus, I'm sure I, too, may have picked this up.  I hope your husband is doing better.  I would love to hear from you.  Please feel free to hit me back.

In spite of it all, I'm still too blessed to be stressed.

God Bless

Reggie

RE: Husband was diagnosed with stage 4 base of tongue cancer - he is 8 days into treatment

by blessedmimi on Wed Mar 09, 2016 09:33 PM

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Reggie, My husband is one yr out from treatment, cancer free! He is physically healing very well. Has to drink tons of water due to dry mouth, but is back eating and drinking just about anything he wants. He is however a completely different person, angry and moody almost hateful.. I am not sure how to help him, his dr has checked several things and his thyroid was not functioning correctly so one month ago he started meds for that. He is now sending us to a neurologist.. But I have doubts that it will help anything, his anger is only directed at the ones who love him the most, our family. Are you saying that years down the road the treatments can cause even more problems? I hope you are doing well, I will be praying for u Tina

RE: Husband was diagnosed with stage 4 base of tongue cancer - he is 8 days into treatment

by JEYEREH on Thu Mar 10, 2016 11:09 PM

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March 10, 2016

Husband just diagnosed with Stage IV throat cancer--HPV also.  ENT said cancer at base of tongue and left tonsil.  Left side of neck was swollen and they did biospy.  ENT said not to get med-port put in until he does triple endoscopy which is being done on Monday March 14, 2016.  We both are very, very anxious because things seem to be running very slow.  Already had PET scan--squamous cell carcinoma/throat.  I just want to make sure to cover all the bases since I will be the primary caregiver.  I am overwhelmed to say the least.  Husband is 62 years old and is currently employed.  Employer has less than 15 employees so it is my understanding that he doesn't have to offer Cobra Insurance.  Already saw oncologist who said chemo-rad but ENT said don't put the cart before the horse.  We are very, very confused.  Medical oncologist said he would fill out papers for my husbands disibility, but how do we know if he will be disabled????  Does that mean he qualifies for medicare immediately.  What phone calls and paper work should I be doing?  Any suggestions will certainly help.  I've been told we are on a very, very long road ahead of us.  I don't quite understand why the medical oncologist would consider disibility already.  Should we take that offer since it was suggested???  Was he just trying to help????  I hope the medical oncologist and the ENT surgeon are on the same page???  I am very confused.  What should I be doing????

RE: Husband was diagnosed with stage 4 base of tongue cancer - he is 8 days into treatment

by makinwavsIII on Wed Mar 16, 2016 11:21 PM

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I started radiation and chemo on 2-7-16 for sqquamous cell carcinoma of overlapping sites of hypopharynx. basically i have a tumor a little bigger than a cm, right next to my l larynx on base of tongue. I found problem as a large lump appearred on right side of neck. so now it's stave 4. I am receiving 7 weeks 5 days a week radiation and chemo once a week. they say 90% success rate and no surgery at this time so I feel pretty lucky. as of today 2-16-16 my throat is getting soar. i was hoping it wouldn't start for another week but today I can tell the change. I do have a peg feeding tube. So Good luck and hope all goes well. I live alone so this will be challenging.

RE: Husband was diagnosed with stage 4 base of tongue cancer - he is 8 days into treatment

by Nanasan on Sat Mar 19, 2016 05:15 PM

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I am so sorry to hear about your husbands condition.In April 2014 after my husband had (and still has) a sore throat for well over a year he was diagnosed with T4 cancer of the base of the tongue.He underwent 30 doses of radiotherapy (6 weeks) and another introvenous drug (chemo) called CETUXIMAB.He felt really well for the first couple of weeks but then started to feel very unwell.He weighed 14 st 4 lbs but within a few weeks went down to 11st.He has not put any weight back on but has stayed stable.He cannot swallow very well, has a soft diet (sadly no T-bone steaks anymore!)His appetite has gone but I have to force him to eat 'something'He gets ready mixed drinks from the doctor called FORTISIPS -they had all the nutrients in that you need.He has two of those every day (300 cals each).Weve had a difficult 20 months since he finished his treatment but his consultant is convinced that the tumor has ' melted away'However he has a LYMPHADEMA (swelling)in the neck caused by the radiotherapy.It is a very hard lump(s) -the lymph glands have been damaged -I think -beyond repair so that's something we have to live with.Also he keeps having bad headaches so he is having an MRI scan next week just to eliminate anything else.Radiot herapy is fantastic treatment but it destroys everything in its way!I don't know if my husband can ever get back to normal (hes 73) but at least he's got me to look after him, I wish you and you husband husband good luck with his treatment.......Take care
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