HYPOTHYROIDISM IS MY NEW AILMENT

 Saw my Oncologist as well as my ENT this week.  ENT scoped me and said everything looked good.  I informed both doctors about my recent incidents of biting my tongue.  This has happened about 6 times in the last 6 months.  A few times while I was eating but most of the time while I was asleep.   The first time it happened in the middle of the night.  I bit down so hard that I punctured my tongue and it bleed a lot.  I woke up very disoriented and in extreme pain.  It took a long time to heal.

Oncologist suggested a CAT scan but wanted to wait and see what the ENT had to say.  I saw ENT the next day and he said he was not familiar with this situation.  He referred me to my dentist. 

I researched online to see what might cause this and I do not have the things they say are associated with tongue biting.  I did purchase dental guard trays to place over my teeth while sleeping.  Will try this and see if it helps.

Also this week saw my family doctor who ordered blood work.  Got a call from the nurse with results.  I have several numbers that are either too high or too low.  The one my doctor was most concerned about had to do with my thyroid.  So he ordered medication called Levothyroxin 25 MCG TAB ALV.  Took my first one today.

Radiation Therapy is a cause of Hypothyroidism so that is what I now have.  Been out of treatment for three years now and so far have lost 2 teeth that just broke off as they said would happen due to radiation.  My dentist just filed them off at the gum line as I can not have an extraction without having Hyperbaric Treatment due to radiation therapy.

So that's it for now.  I am able to eat most things if I can push it down with a soft liquid like oatmeal.  Meat is still hard to swallow.

I WORE A MASK

I had to wear a mask. A real mask, a serious mask. 5 times a week, for 7 weeks, bolted to a table, while they pumped focused radiation into my neck and jaw. Each time for 20 minutes I had to hold absolutely still during the treatment. I couldn’t flinch or even scratch an itch. All the time screaming inside because of the inevitable claustrophobia and the fear that the radiation would probably just cause more cancer (maybe irrational).

Yea, I wore a mask because I had to in order to try and save my life. So let's all wear the silly little masks.

BROTHER'S ENT SCAN

My brother had an appointment with his ENT doctor and was scoped.  Everything looks good.

He is still not able to eat.  Says he can't get used to his false teeth and food still does not taste right.

BROKEN TOOTH

One of my teeth broke off yesterday.  I was told that this might happen because of the radiation.  It's been almost 3 years since I completed treatment and I guess it's starting to happen.  I can't have any extractions without hyperbaric treatment.  Don't know what the dentist will say when I call him on Monday.  

BROTHER EATING

My brother has finally eaten his second meal.  It was pancake and syrup.  He said it felt weird.  I know what he means.  If he keeps this up he'll have that PEG tube out soon.

He has an appointment with the Physical Therapy office to have lymphatic massage on his face and neck.  I asked him not to go as it is not safe during this pandemic.  He's having second thoughts.

BROTHER'S DENTURES

My brother finally got his dentures and they look great.  He has gone so long without teeth since they all had to be pulled prior to his chemo and radiation treatments.  Yesterday he sent me a photo of him smiling showing his new pearly whites.  It was great.

He said he was afraid to eat cause he didn't know what he could swallow.  I explained to him that he should start slow with small bites of something wet and slippery like pancakes with syrup or scrambled eggs with butter.

Then last night he texted me that he had eaten grits and eggs.  I was so happy to hear that.

 

MY 3 MONTH ENT FOLLOWUP

Got scoped yesterday and everything looks good down my throat.  Because I am 2 1/2 years out of treatment, I don't have to be seen again for 6 months.   

Today had appointment with my Cardiologist.  Had an EKG which was fine.  My blood pressure was high and had it taken several times during my stay in the exam room.  160/75

Was told to monitor at home and call in if it gets higher.

BROTHER HAS TUMOR ON LEFT KIDNEY

Transported my brother to his appointment with the Medical Oncologist.  He went over the results of his recent CAT Scans and Blood Work.  It was not good news.

My brother has a tumor on his left kidney the size of a nickel.  He has been referred to a Urologist.  The Oncologist said that they usually just keep an eye on this type of tumor and if it grows then they would do surgery to remove the tumor and not the whole kidney.  This is a much easier surgery to do on the patient.  Solid kidney tumors can be benign, but most often are found to be cancer.  About 90 percent of kidney cancers are a type called renal cell carcinoma.  

There are four stages: Stages 1 and 2 describe cancers in which the tumor is still in the kidney. Stage 2 means that the tumor is growing and is larger than seven centimeters across (2.7 inches). Stages 3 and 4 mean the cancer has spread either into a major vein, to lymph nodes, or to other organs.  My brother would be considered in Stage 1 as his tumor is about an inch in size.

His blood work showed that he is dehydrated, malnourished, and anemic.  He is not getting enough protein.  He has ordered 3 infusions a week for the next month.  I was glad to hear him say that.

He also encouraged my brother to begin eating and teaching his taste buds to taste again.  He also said to increase his water intake between tube feedings.

He mentioned something about his lungs but did not elaborate on this.

I always felt that his weakness was due to his diet not being sufficient.  Now if we can get this rectified he will have the strength to continue with his physical therapy and build up his muscle strength.  

My brother feels that he will  not survive a major surgery on his kidney.  He is so run down and weak and has so many other health issues so I can understand his fear.

He will be seeing Dr. Alexander for his tumor on the kidney.

BROTHER'S PHYSICAL THERAPY APPOINTMENT

Transported my brother to his first Physical Therapy appointment yesterday.  The therapist did an evaluation of his strengths and had him do different exercises.  She said he had some weak areas but was not all that bad.  She will be seeing him twice a week for 6 weeks.  Sure hope that helps with his overall weakness that he has been experiencing for several months now.

He has a little more lymphedema on his face than the last time I saw him a few weeks ago.  I encouraged him to watch the Youtube videos on how to do lymphatic massage.  If he doesn't move that fluid out it will eventually turn hard and be painful.  Informed him of a compression garment that can also be used.

He is still not eating by mouth and is 4 months out of treatment. 

BROTHER'S DENTAL APPOINTMENT

Transported my brother to his family dentist in order to get his impressions done.  Was a very short visit but they informed that the next visit will be about an hour long.  More impressions need to be done at that time.

The dental assistant said that his gums had not completely healed from the extractions done about 4 months ago.  Probably due to the Radiation Therapy.  There are some protrusions that he may be able to remove as they continue to come out of his gums.  She instructed him to use a q-tip to get them out.

He was given an appointment for a week from today.

BROTHER IS NOW N.E.D. - No Evidence of Disease

Transported my brother to the ENT doctor today to discuss the results of his Fine Needle and Core Needle Biopsy of the new lump on his neck.  Results show no cancer.  It is a Warthin Tumor not a lymph node.  

Treatment of Warthin tumor generally includes surgery to remove the tumor or careful observation to watch for changes in the tumor over time. Because Warthin tumor is almost always benign, additional treatment (i.e. radiation therapy and/or chemotherapy ) is rarely needed.

I asked the ENT doctor to look at the inside of his cheek as there is a white patch I am concerned about.  We don't know how long it has been there but was noticed a couple of months ago by the Nurse Practitioner.  Nothing was said about it at that time.

ENT looked at it and didn't say what it was.

We then had an appointment with the Medical Oncologist.  He informed us that there is no cancer in his neck.  I then asked him to look at the white spot on the inside of his cheek which is the size of a pencil eraser.  He looked and said it was Leukoplakia which could be precancerous.  It should be monitored and possibly have a biopsy taken.

I came home and did some research.

Treatment of Leukoplakia

Most patches improve on their own and don't require any treatment. 

If a biopsy comes back positive for oral cancer, the patch must be removed immediately. This can help prevent cancer cells from spreading.

Patches can be removed by using laser therapy, a scalpel, or a freezing procedure.

Removal of leukoplakia patches. Patches may be removed using a scalpel, a laser or an extremely cold probe that freezes and destroys cancer cells (cryoprobe).  Follow-up visits to check the area. Once you've had leukoplakia, recurrences are common.

These white or red patches might be harmless. But they can also be precancerous and contain abnormal cells.  Only about 5 out of every 100 people (5%) diagnosed with leukoplakia have cancerous or precancerous changes.

Within 15 years, about 3% to 17.5% of people with leukoplakia will develop squamous cell carcinoma, a common type of skin cancer. The likelihood of developing cancer from leukoplakia depends on the size, shape, and appearance of abnormal cells.

Leukoplakia usually doesn't cause permanent damage to tissues in your mouth. However, leukoplakia increases your risk of oral cancer. Oral cancers often form near leukoplakia patches, and the patches themselves may show cancerous changes.

Mild leukoplakia is usually harmless and often goes away on its own. More serious cases may be linked to oral cancer and must be treated promptly.

A biopsy will likely be taken to rule out other causes, such as oral cancer. During the biopsy, a small piece of tissue from the lesion will be removed to be examined in a lab. A numbing agent will be used so that you will not feel any pain.

Leukoplakia is usually harmless, and lesions usually clear in a few weeks or months after the source of irritation is removed. If eliminating the source of irritation is ineffective in reducing leukoplakia, the lesion may need to be surgically removed. The lesion can be removed either by your general dentist or by an oral surgeon.

So we got some good news and some not so good news.  I did not feel relieved after these two visits.  I was so hoping that we would all feel extremely happy but we don't.

My brother will be going to get his dental impressions soon and if he goes to his Oral Surgeon - he will be able to assess the white patch and do a biopsy if needed.

BROTHER HAVING BIOPSY TODAY

A Core Needle biopsy is scheduled with Dr. Rau.  This will be his second biopsy.   This should tell us whether it is cancer or just dead cancer cells.  We will not know for a week or so.

Will be seeing Dr. Long on the 10th.

Biopsy date changed to the 13th.

BROTHER'S NEW LUMP ON NECK

On January 1st a new lymph node popped out on the right side of my brother's neck.  Same spot as before.  Oncologist ordered a CAT Scan which lit up as cancer.

He then had his 3 month PET scan.

Made appointment with ENT doctor who ordered a Core Needle biopsy with Dr. Juks.

His options are surgery or Immunotherapy.

I'm hoping it is just dead cancer cells showing on scan.  The biopsy will tell.  

New Lump- 1.6X2.1X2.2cm
Node #1 - reduced to 2X1cm
Node #2 - reduced to 1cm

Now that I have had time to soak in what we heard today I can think a little clearer now.  And it dawned on me that his results of the CAT scan showed 3 different measurements of lymph nodes.  This leads me to believe that this is a new node.  

They give the size of the new lump, then node number 1 and then node number 2.  All different cm.  So if there are 3 different measurements then there are 3 different nodes involved.  Not good.  

Next thing I found is that nodes larger than 1cm are considered abnormal or malignant.  His node number 1 is 2X1cm.  Not good.  

Another question I have that the ENT couldn't answer is - did scan show anything throughout the body.  Is there another primary tumor?  The Medical Oncologist will be able to answer this for us on Wednesday. 

The biopsy will show if the new lump is Squamous Cell Carcinoma or not.  If there is no primary tumor then is it Lymphoma, which is cancer of the lymph node and not Squamous Cell Carcinoma.  If it is SCC then it is called Regional Recurrence with no primary tumor in the body somewhere.  

If the new lump is just dead cancer cells - we still have to worry about node number 1 being larger than 1cm.  This makes me want to throw up.  Been nauseated since seeing the results of the CAT scan.  It was like it was being told to me and not to my brother.

Looks like surgery is his best option.  Quick and done.  There is a 3-4 week recovery from neck dissection surgery.  Lots of folks on my support group have had it done.  Immunotherapy won't be quick and may not be as effective as surgery.  It's his decision.  And it is a hard one.    Not sure what I would do.