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.

BROTHER THROWING UP

Transported my brother to the cancer center for his infusion today.  He threw up his morning tube feeding and had diarrhea as well.  Not sure what brought that on.

He is feeling pretty down and thinks he is regressing with his recovery.  I stressed that he is only 2 months out of treatment and things will get better.  It just takes a long time.

He had been scheduled for his 3 month PET scan on January 6th.

ANEMIA IMPROVING

Transported my brother to his appointment with the Medical Oncologist today.  He stated that my brother has shown some improvement.  We informed him that the iron supplement for his anemia seems to be working and he is feeling stronger and no longer needing a wheelchair.  His lab results showed an improvement in his anemia.  His wife checked on past lab results and they all showed that he was anemic since the beginning of treatment.  She asked why he was not given iron all this time.  Doctor said that the body usually replenishes the iron on its own.  However, in my brother's case it only got worse.  So it seems somebody dropped the ball in this case.

My brother told the doctor that he would like to attend physical therapy at the hospital but not that interested in speech therapy as he has no trouble swallowing.  

We discussed his first PET scan that is due in the middle of January and the doctor said he would start the process of getting that scheduled.

We then went to the Infusion Center for him to get his weekly fluids.  He has gained a few pounds and is only eating broth by mouth and using his PEG tube for his protein drinks.  It is still not enough as he feels that he still needs the infusions as he feels so much better afterwards.  He spoke to his Dietician today as well.

BROTHER'S ONCE A WEEK INFUSION

Transported my brother to the cancer center for his labs and infusion yesterday.  He also saw the nurse practitioner who informed him that he has lost a lot of muscle mass and would benefit from physical therapy.  She also said that his lab results showed that he was anemic.  

This would explain why he is so weak.  Today was the first time that he needed a wheelchair to get around.  He gets light headed due to his low blood pressure.  She advised him to have all his medications checked by his doctor.  She gave him a hand out listing different liquid iron supplements and foods that he can eat to help with his anemia.  He will be getting another infusion next Tuesday.  Not sure when they are going to cut him off completely as he is still getting dehydrated.  

He had a Swallow Study done and was told that he can be on a soft diet.  He is eating by mouth a little and still using his PEG tube for protein drinks.   

Today he went to his cardiologist and had his pacemaker checked which is fine and also had an echocardiogram.  His heart is fine.

BROTHER SIPPED GUMBO BROTH TODAY

My brother tasted broth for the first time today.  Still using PEG tube.

He had an appointment with the Speech Therapist yesterday.

Tomorrow he sees his ENT doctor.  He is concerned about pain in his neck where lymph node cancer was.  I told him it was probably lymphedema.  My lymphedema still hurts in my neck, if touched, as well.  He fears the cancer has returned.

BROTHER'S FIRST DRINK OF WATER

Transported my brother yesterday to his infusion appointment and Radiology Oncologist appointment.  His doctor looked at his throat and allowed me to look on as well.  His throat was full of mucous which made it hard to see the throat.  The doctor wanted to scope him but decided not to due to his thrush.

The doctor stressed the need for him to begin drinking water.  My brother has refused to ingest anything by mouth.  I have stressed to him the need for sips of water often.

He also had a visit with his dietician who stressed the need for him to begin drinking fluids by mouth.  He informed her that he does not drink anything as it nauseates him and gags him.

I tried to explain to him that things will improve - but slowly.  He is running out of patience and I can understand that.  However, I feel that he needs to take more responsibility for his recovery.

He is now scheduled for only one infusion a week and he is afraid that it won't be enough.  We all feel that he needs to start hydrating himself at home and not rely on the infusions.

So this morning I received a text from him stating that he drank 3 sips of water last night and did not gag.  He expressed fear that it might go down the wrong way.  I explained to him that he would choke and cough if it did.  He said that it didn't.  He wanted to know if he should try some soup now.  I said he could try some warm soup broth but nothing else till he has the Swallow Study.  They will then tell him what he can ingest by mouth.  

Told him to sip water all during the day to help train his throat muscles again.  I hope he does this.