Gallium and PET Scans

Bill asked me to do some research on Gallium scans and PET scans for the purpose of determining the levels of infection and cancer in Dad's body.  Here are some of my early thoughts:

• Gallium citrate appears to be no more dangerous to the kidneys than the antibiotics Dad is currently taking.  It is often used to diagnose kidney function and nephritis.
• After the Gallium is administered images are taken at regular intervals the first day than once a day for three days.  Each set of images takes about 30-60 minutes to produce.
• Sometimes Gallium scans are also used to determine the level of lymphoma and there may be some value to Dr. Nguyen which may preclude the necessity of a PET scan.  However, Gallium is mostly used to diagnose the level of non lymphocytic lymphomas and may not be acceptable to Dr. Nguyen. (my understanding is Mantle Cell is a lymphocytic lymphoma).  
• There are two other types of scans that may also be used, indium leukocyte imaging and technetium granulocyte.  The indium scan is NOT appropriate, but I would be curious to hear what Dr. Hedari and Trang feel about the technetium scan.
• IF the Gallium scan does take place, please let the testing institution know he has diarrhea and NOT to administer laxatives (this is sometimes, not always, but sometimes done to clear the Gallium from the body)

Some questions for Dr. Hedari at today's appointment:

1. Does he agree with the timing and purpose of the Gallium scan currently scheduled for October 1st?
2. Is the Gallium scan the most accurate in identifying the clearance of the SBO?  What about  technetium granulocyte scan?
3. Is this test going to significantly impact Dad's remaining kidney function?
4. What if the test still shows positive signs of SBO?  Do we just continue the same antibiotic regimen?  Will we need a future Gallium scan?
5. Can we concurrently scan for the level of lymphoma to eliminate the need for the upcoming PET scan?
6. Are there any suggestions he could make about this procedure to give Dad's ENT and Oncologist more and better information?

These might be better for Dr. Saike, but I think Dr. Hedari's opinion is valuable too.

1. Is the PET scan hard on Dad's kidney?
2. Is there a safe time period between the Gallium scan and the PET scan that should be observed?

That's it for now.  I may add some things as I ruminate about this.  I did find a scientific article that recommend the use of N-Aceytl-Cystiene (NAC) as a protector of kidney function for both Gallium and PET scans.  NAC is a nutritional supplement I can provide if you choose.

And this may be completely irrelevant (audacity of hope, and all that) but I did run across this article on the curability of Mantle Cell Lymphoma.  Granted it was a small study of subjects younger than 89 (they averaged 66), but it did talk about 5 year survival rates.
http://www.docguide.com/mantle-cell-lymphoma-curable-intensive-immunochemotherapy-presented-ash

Dr. Nguyen 9/4/2012

Picked Dad up at 1:30 for his 1:40 appointment with Dr. Nguyen.  I certainly did not leave enough time to get across town.  Dad told me that he was up at 7 am and had breakfast in the dining room at 7:30.  He had just finished physical therapy shortly before I arrived.  He was using the walker and he is getting better at it.  They told him to put the cane away for awhile.

We got back to the room at 3:45 and he was really tired and was ready to lay down before dinner.

I'll email you the audio of Dr. Nguyen's visit.

Heart Hospital Wednesday Morning

Dad was asleep when I arrived.  He seemed comfortable.  His room does not have a bathroom and they had a portable one in the room.  He woke up shortly thereafter and asked for his hearing aid.  There was no battery in it and, after a quick search of the floor, we were back in business.

Dad is in good spirits.  I think the antibiotics are keeping the infection at bay.  I could hear the case worker speaking at the nurses' desk and she came in and got a little history.  It appears we should not have been so up front with them about the purpose of our stay being to get Dad into skilled nursing.  We weren't told any of this before we made this decision.  They have their own procedures and tests they want to do on Dad.  We did not think that would happen.  Most of the tests are just the usual blood, x-ray, and ct variety.

Anyway, the case worker came in and told me that Dad would be on antibiotics for 6-8 weeks and asked about his home health care.  She then told me that Dad would need skilled nursing and said we had a choice of where to take Dad.  I mentioned we had made arrangements for Rosewood and signed a paper to that effect.  The case worker then called over to Rosewood.  This is how it works, I guess.

Dr. Amin came in and said he was changing the antibiotic order.  He wanted to add Zyvoxx(?).  When I told him we were working with Dr. Hedari, he said he was changing the order because he wanted to confer with Dr. Kitt over at Memorial, but she was out of town.  I explained we had been seeing Hedari for a couple of weeks and if he could confer with him before adding the Zyvoxx I would appreciate.  He said he would.

Dad ate all his breakfast.  He was in good spirits.  I think having a goal and working toward it keeps him somewhat occupied.  That and feeling a little better.  It is a bit difficult seeing him so weak.  One of the side effects of the Zosyn is muscle weakness.  I'm hoping the transition to Rosewood will be smooth and once there he can get some physical therapy.  He was also due for an EPO shot today.  Nurse Matt was going to call over to Dr. Ngyun to get the dosage.

August 14, 2012 Update

Dad had a real good day today.  He was up at 8:30 to get ready for his doctors appointment and only took a one nap and a couple of short 20 minute naps.  His energy level was a little low in the evening, but we had the kids and grandkids here which makes it a little hard. 

Other good news, Dad test for C-Diff came back negative.

We did see Dr Trang today who noticed a big improvement in his mood and mentioned that he could see Dad's left ear drum for the first time.  He told Dad that he would be on the antibiotics for at LEAST 6 weeks and probably longer.  Dr Trang wants to see Dad in two weeks.  His pain level was 2 almost all day, he is eating good and sleeping good.  His weight today was 167 lbs up 2 lbs from last week.

Dr Nguyen called today to check up on Dad and Tom told him that he is doing better but sleeping a lot of the time and tired a good portion of the time he is awake.  He asked Dad to come in for a Procrit (EPO) shot, which we did after Dr Trang's office visit.  This will help with his anemia and hopefully give him a little more energy.  We asked Dr Nguyen about the Lasix and he said Dad could take it (Trevor would order it for the fluid in Dad lung/abdomen as well as the swelling of his feet/ankles and Dr Nguyen would take him off of it).  Dr Nguyen also said he would prefer that we keep Dad on the Lexapro (anti-depressant) and cut back on the pain meds.  We tried putting Dad on 1/2 tablet on Hydrocondone 4 x today and he said he pain was ok.  We are hoping that the antibiotics are starting to kick in.

Dad has enjoyed his visits with Amelia, Will, Krys and Sarah.  He hasn't been able to enjoy the smaller kids too much, but it sure has helped me having the little ones here and the energy they bring.

We see Trevor at Dr Nichols office tomorrow at 1:00.

Love to all,

Bill

August 1 Medications

Catie's Notes

Medications – William Harrer – August 1-2012  (after seeing Dr. Nguyen and Trevor in Dr. Nichols office)

With notes and questions (if any)

Beginning at 7 pm on July 31^st:

1.       Prednisone, 20mg as follows – 3 tabs once a day on Tuesday and Wednesday evenings, with dinner – On Thursday (Aug. 2), Friday and Saturday (8/4) he will take 2 tabs once a day, then on Sunday (8/5), and Monday (8/6) he will take 1 pill at dinner. He will be out of the prednisone on Monday (8/6)

2.     Metronidazole, 250mg, 1 tablet 3 times per day – I do not see that he is taking this any longer.  He only has 2 pills left in the bottle, but none were in the pill case, so I know he has not taken them since I have been here.  Dr. Nguyen – Should he still be taking this?

3.      Atenolol, 50mg, 1 per day, 90 days

4.      Sodium Bicarb, 650mg, 1 tabs, 2 per day,

5.    Vitamin D - One a day

6.     Vitamin B supplement  2 times per day.

7.   L-Lysine – 500 mg Capsule – 4 times per day (this is intended to help with the virus infection) –

Dr. Nguyen – is it okay if he takes this? Is there any risk to his kidneys or liver? 

8.  Lexapro 10mg – for mood.  We will wait to give him these until he settles in with this latest round of prednisone as to determine how he is reacting to the prednisone in relation to mood and energy level.

9.  Valtrex – 1 gram (it is HUGE).  He will begin taking this after seeing Dr. Trevor on Wed. Aug. 1^st..  One of the side effects of Valtrex is DEPRESSION – so.. be aware.. I have taken it several times and I have had severe depression when on it.  It can also cause dizziness.  This is for the viral infection – which could be the underlying issue with the Bell’s Palsy. 

10.  Lacri-Lube (over the counter ointment for eye) He needs this at night, then cover eye with tape.  He also needs to use artificial tears throughout the day. This is really important to ensure his eye does not get ulcerated. 

In Addition:

Inhaler, Proair, HFA 90 MCG IWAK, Albuterol Sulfa, 2 puffs as needed.

Questions:

?? Should he be using the ear drops still?  The ciprodex?? I have a full prescription, but have not been giving it to him. 

Stopped per Dr. Nguyen:

Allopurinol, 100mg, 1 per day, 30 days
Augmenten – which was prescribed by Dr. Rabinov.
Furosemide

July 31 Update

On Tue, Jul 31, 2012 at 3:36 PM, cate praggastis  wrote:

Okay... I will see if I can fill all that went on today... so far..

First off, when I got here yesterday (Monday), both Tom and John had told me about the droop on Dad's face. John had done some research and suspected Bell's Palsy. Today, specifically this morning, when dad woke up.. he was distraught.. his speech was slurred and his droop was very pronounced. He said.. "I think I have had a stroke". I said okay, called John .. who called Tom.. I got some food in Dad's belly while they were talking.. and then I called Dr. Nichols and took Dad there. We saw Trevor, the PA (smart guy). He suspected Bell's Palsy right away because of the multiple involvement of Dad's eyes and mouth. We have an MRI at 4 pm to rule out stroke.

Trevor had blood drawn to find out if Dad has a virus. Since he has a history of herpes (cold sores), it is suspected that the virus is acute and causing the Bell's. We see Dr. Nichols again tomorrow at 10.30 am for the results. In the meantime, he (Trevor) put dad on Prednesone and Valtrex, which would help with the virus and eventually work on the Bell's Palsy.

In addition, because Dad cannot close his left eye.. Trevor ordered Lacri-Lube Eye Ointment. There is concern that he MUST lubricate the eye regularly, to prevent blindness.. since he cannot blink at all. He has to sleep with his eye taped closed. I worry this might offset his balance a bit.

Dad cannot chew on his left side. He ate eggs and a bit of cottage cheese last night, and some watermelon.. and had 1 egg this morning. He had some Ensure this afternoon.

We then went to see Nguyen as well this afternoon. Dr. Nguyen has a good manner with dad. He was concerned about the Bell's and the virus.. so he has suspended any treatment of CHEMO until the results are confirmed and dad is feeling better. He does NOT want Dad taking the Augmentan that Dr. Rose prescribed. He thinks it is playing havoc on his stomach and not working on the ear infection, which is likely in the mastoid bone.

Which brings me to Dr. Trang (the ear surgeon). Dad has an appointment with Dr. Trang on Tuesday, Aug. 7th at 10:30 in the morning. (The office just called to confirm that time, Tom - so whatever you have from Dr. Rose is not current). Dr. Nguyen will confer with Dr. Trang AND Dr. Nichols office on the best road to travel. (stay to the right of the building, go around the back side and enter through the door that says "Surgery Center")

Dr. Nguyen was in support of the Trevor's plan for treatment for the Virus, also felt like it was Bell's Palsy, has piggy backed on the blood draw from Dr. Nichols office today to check his vitamin levels and anemia. He was kind and gentle with dad and could see that Dad is distraught and depressed. I suggested a mild anti-depressant that got me through the loss of mom... It is called Lexapro. Dad will begin taking it tonight. Dr. Nguyen felt it might help Dad. He wants Dad to feel like he can move around, get around and have a bit of energy. He is a very compassionate doctor.

Dr. Nguyen wants to ensure the Furosemide and Allopurinol are STOPPED. He said to give Dad 500 mg of Tylenol every 6 hours instead of the Tylenol with Codeine, as that is making him too tired and could be exacerbating his depression - plus Dad hates how he feels on it. He said Dad SHOULD not take aspirin or Advil.. which I didn't know.. so that was a good update for me.

Dr. Nguyen said, after he looks over all the tests and confers with the other doctors, he needs to see Dad next week (Tuesday, August 7th at 3pm)- Tom or John.. you can likely change that if you want to set them up back to back with Dr. Trang. He, at that point will discuss how to proceed with the Chemo, and the possibility of putting Dad on and appetite stimulant to enhance his food intake. I had a friend tell me that she is on medical marijuana in pill form.. and that it has helped her mood and her appetite, while also controlling some of her pain from the chemo and infections that she has. She is also undergoing chemo for Cancer, but not lymphoma.

Dad said everything tastes salty, that he always has a salty feeling in his mouth.

Dad is resting now, for about another 15 minutes, then we will go to the Radiology place for the MRI. We will not know the results of that until we meet with Trevor tomorrow morning. Let me know if you have any questions.. or if it seems like I left something out. Love you all...

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