Getting back to blogging is harder than what one would think. I think I was worn out after nine months with helping Joe fighting Mantle Cell Lymphoma then back on the INCYTE (Ruxolitinib, RUXO for short in future references) for Myelofibrosis.
Our trip to Jamaica was very laid back at Breezes Grand Negril. The most adventuresome Joe and I got was snorkeling. Joe went once but opted out on other trips since the bottom of his feet hurt when he climbed on the ladder to get back in the boat. We both got a bunch of rest and stayed away from big crowds. We did take a late afternoon excursion to watch the sunset at Rick's Cafe on Seven Mile Beach which is a "must" if you visit Negril. The bar sits on top of the cliffs where one drinks the fancy fruit drinks as one watch the professional local divers just off the cliffs which are about the third of the size of the ones in Acapulco. The tourists who are somewhat brave (drunk) jump off the lower levels probably after a least five fruit concoctions. The tourists show an amazing movement of their hands and legs as they scream on the way down to splash into the cove. After experiencing the All-Inclusive resort, Joe and I decided that cruises were what we like best. It wasn't even close.
Joe's blood results continue to improve and stay pretty much stable with phlebotomies to keep his hematocrit at 45. The phlebes were done at Winship Cancer Institute at Emory University. The nursing staff take good care of Joe. I have noticed that the operation is smoother and faster with the blood draws, labs and getting the phlebes completed at Winship. We are also grateful for the compassionate and good care that Dr Elliott Winton and his Physician Assistant, Jessica Neeley give us. They work closely with MDACC to make sure Joe gets what he needs while we are at home in Atlanta.
On Wednesday, September 14th, Joe and I flew Delta to MDACC in Houston for Joe's first follow-up with Dr Romaguera for Mantle Cell Lymphoma restaging and a routine follow up with Dr Verstosvek in the Leukemia Department for the RUXO trial for Joe's Myelofibrosis. It is a challenge dealing with two incurable blood disease and trying to keep Joe's health care balanced.
Our plane arrived on time at 10:15AM and we picked up our Enterprise Rental Car.They upgraded us to a Jeep Liberty which had only 2000 miles on it. Enterprise is quite efficient in getting checked in. I used Priceline to bid on rental cars. It is quite expensive to rent cars in Houston and one must be diligent in getting the best deal. The best I could do was $48 a day which was not a gold medal bid at all.
Joe's first appointment for blood draws and chest X-Ray was not till 2PM but we got to the Diagnostic Labs early at about Noon. I checked Joe in and surprisingly they saw him within 15 minutes then the X-Ray was done immediately after that. It was great since we were able to meet up with Monica Smith who is a member of the Greater Atlanta MPN Support Group. She moved to Houston at my suggestion to get better care than what she was getting in Atlanta. Monica has Primary Myelofibrosis which she got in her 20's, way too young. She had her spleen removed by Grady Hospital but her follow up care was poor and I knew she needed to see Dr Verstosvek at MDACC. Monica moved to Pasadena, Texas (suburb of Houston) with her wife and her two kids in July. She adores Dr V and he found a trial for her which she just started. She is awed by MDACC, the staff and the facilities. She calls it the Disney World of Hospitals. Joe and I spent about an hour talking to Monica and her wife and catching up on her life and me giving her news on what is going on in Atlanta. We got a photo of all four of us in the Sun Room on the second floor which I will post.
Joe's next stop was to get a CT Scan. There is the prep where Joe must drink two barium milkshakes which takes a few hours. Joe checked in at 4PM and was not done until almost 8PM. It seemed like forever. He hates the stuff the squeeze up into the rear end which is very uncomfortable and the after effects are undesirable.
We were to meet our Chinese friends, Yan and Hang, who are studying for advance degrees in Houston and Atlanta. They are so bright and so lovable. A few years ago we had invited them to Thanksgiving Dinner with our family to learn about American Culture. The friendship continues to blossom. We were suppose to meet them at Cleburne's Cafeteria but by the time Joe was finished, it was too late so Yan suggested the Olive Garden on Old Spanish Trail. Finding the restaurant at night and using Google Maps on my iPhone was a total failure. Somehow we missed the road and I kept following Google Maps. Driving and reading Google Maps at night is fruitless. Joe was no help at all. I could tell he did not feel well and was getting tired. It was very frustrating. Yan called on the iPhone and we decided to meet at Joe's Crab Shack that I had passed several times as I drive around in circles. I think it was about 9PM when we all met and enjoyed each others company.
About 10:30 PM we started to drive to the Crown Plaza on Kirby. We passed one Crown Plaza near the stadium but I told Joe we were staying at the one at Greenwood Plaza where we had stayed twice before. Alas, as I checked in, they had no reservation for us. What? My confirmation was in the car up on the fourth deck of the parking garage. Joe was taking a comfort break in the Men's Room. I remembered that the confirmation was in my email so I trekked back to the front desk and showed the clerk the confirmation. Sure enough, the reservation was at the Crowne Plaza alson in Kirby Drive but the other end and it was near Joe's Crab Shack. I apologized profusely to Joe over and over again since I knew he was tired and feeling sick from the barium junk.
We checked in and the room was so far away from the lobby but the room was clear, nicely decorated but it still had an old TV. You would think that the Crowne Plaza would have flat screen TV's but it really did not matter. I had used Priceline to bid on a four star hotel for $50 a night and I won the bid with the Crowne Plaza being the hotel that accepted it. I let Joe into the room to get himself comfortable as I parked the car. Since the place was filled with guests, I had to park towards the back side. The only way to get back into the hotel was through the lobby since it was so late. I got back to the room and Joe was laid back into the easy chair watching the news. I decided I had to have my Diet Coke and walked down the third floor, to the second floor, first floor and heck there was no vending machine. Down to the front desk I went where I asked where the heck are the vending machines? There was only one (four buildings in the hotel) and it was totally in an out of the way place near the conference rooms, down two corridors behind the lobby. Of course the vending machine was out of Diet Cokes but there were some Coke Zeroes. I had to laugh since I was exhausted with all the Abbott and Costello mess ups.
Thursday we had the doctor consultations. Our first one was with Dr. Romaguera in the Lymphoma Department. We were immediately greeted by Goley Richardson to come on back to the exam area. She asked the hundred questions then was followed by the Lymphoma Resident who examined Joe. He measured Joe's spleen from the outside at only 3cm. Wow, the spleen continues to shrink. Dr Romaguera comes in the room with two female physicians from out of the country. Romaguera always greets me with a big bear hug and Joe gets a strong handshake. Romaguera is pleased with Joe's blood results, XRays and CT Scans that showed no evidence of Lymphoma. Good news indeed, He did state that the CT Scan showed the worsening of Joe's sinusitis to the point of being acute, Dr R ordered another blood test to check Joe's IgG (antibodies) levels in spite that his blood tests were good. He stated that the results probably would not be known until Monday.
Our next stop was the Leukemia Department for a follow up with Dr Verstovsek for the RUXO trial for the Myelofibrosis. Dr V was his usual sweet suave self, He is hoping that we would attend the New York Symposium on November 2 but we have not made a final decision on that trip. Dr V was very pleased with Joe's success on the RUXO and that he would see Joe for another follow up in December the same time Romaguera will see Joe.
We were done with our visits at MDACC and the rest of the day and evening was free. We would fly home on Friday around lunchtime.
We arrived in our home about 5:30PM and I checked my emails, There was a message from Dr Romaguera that Joe's Immunoglobulin levels were low. He wanted Joe to see an ENT specialist and get a culture of the secretions in his sinuses. He also recommended that Joe get infusions of Immunoglobulins once a month.
I fired off a detailed email to Dr Winton and Jessica Neeley expecting to hear from them on Monday sometime. On Saturday afternoon Dr Winton returns my email that he will set up infusions for the following week and work on getting Joe and ENT consultation. Amazing Saturday night I get a copy of an email from the Nurse Practitioner in the ENT department that Joe can see Dr Zara Patel at Emory Midtown at 9AM Monday! A little over an hour later, I get an email from Dr Patel acknowledging that she will see us Monday and if Joe needed anything over the weekend to contact her. WOW!
We saw Dr Patel this morning at Emory Midtown. She was a young, attractive, personable and confident physician. She examined Joe's sinuses with a scope that I was also able to view on a TV screen. I could see the secretions and that his right sinuses were more inflamed than the left and the doctor was able to get some secretions to be examined in the lab. She instructed Joe to irrigate his sinuses twice a day with a saline solution which will take a bunch of prodding from me to get Joe to do it. She also prescribed AVELOX as an antibiotic. The results from the lab will probably be available in three days.
When we got home, I sent the scanned medical test results to Jessica Neeley at Winship Cancer Center. She had instructed the appointment clerk to set up the office visits and tests Joe needs. I replied and asked about the immunoglobulin infusions. She stated that they were not successful in getting that set up. Dr Winton needs to certify him and I am betting that Joe will need Winship to do the same tests. It may not be till next week till we can see Winton and get the infusions. Procedures and protocol needs to be followed. I find it frustrating since I want it done quickly but it is what it is.
You can stop reading now since I am going to post the results of the tests that were done at MDACC. I know some people are interested in the facts so that is why I am posting them. I may be able to attach a copy of the full blood tests since I was able to scan them and save them as a pd file.
Chest PA and Lateral X-Ray 9/14/11
Comparison made with the prior exam of 6/8/2011
The lungs remain clear bilaterally, Minimal subsegmental atelectasis noted in the right base, unchanged. The lungs remain otherwise unremarlable. No new focal abnormality.
No evidence of metasttases or acute infiltrates. Unchanged,
CT Abdomen and Pelvis 9/14/2011
CT of abdomen and pelvis with intravenous, oral and rectal contrast. Comparison is made with the prior exams including the most recent exam on 6/8/2011.
A few hepatic cysts, unchanged. The liver is upper normal in size with no gross change from the previous multiple exams. There is a moderate-to-severe splenomegaly with moderately distended portal vein. The position of the spleen has changed between between the most recent exam and the current one. Although the largest cross sectional dimensions are about the same, measuring 19x11 cm as opposed to 20x10 cm previously on the exam of 6/2011, the volume of the spleen appears smaller.
The rest of the intraabdominal solid organs remain otherwise unremarkable. No hydronephrosis. There are small cysts in the kidneys.
There is no definite lymphadenapathy or peritoneal disease in either abdomen or pelvis. Minimal periportal nodes are unspecific.
Impression: Persistent splenomegaly and portal hypertension possibly some decrease in overall volume, if any change. No new focal adnormality or lymphadenopathy.
CT CHEST: 9/14/2011
CT chest with intravenous contrast with comparison made with exam ion 6/8/2011.
The focal spiculated, most likely scar in the right apex has been stable over multiple previous exams. Minimal subsegmental atelectasis at the bases have been stable. The lung parenchyma remains otherwise unremarkable. No new focal abnormality.
Free of lymphadenopathy. Visualized soft tissue, including the axilla, show no evidence of new focal abnormality or metastasis. The small calcified mediastinal nodes are most likely treated disease or previous granulomatous diesase.
Impression: No evidence of metastases and recurrence.
CT SOFT TISSUE NECK WITH CONTRAST 9/14/2011
Compared CT neck 8/6/11
Findings: There is no nasopharyngeal or tonsillar enlargement. There are no enlarged lymph nodes withing the neck or supraclavicular fossae. There is a coarse calcificatio noted within the left anterior thyroid gland which appears stable since the prior study, to be followed. Again demonstrated is a dural-based calcified lesion along the right posterior fossa likely repesenting a meningioma which is stable in size. There is an increae in size of air-fluid levels within the maxillary sinuses bilaterally. There is new diffuse opacification of the sphenoid sinuses and ethmoid air cells as well as the frontal sinuses. The findings are consistent with acute sinusitis.
IMPRESSION: No enlarged lymph nodes within the neck.
Marked progression of sinusitis, consistent with an acute pansinusitis. There are no CT findings to suggest fungal sinusitis.
IMMUNOGLOBULIN Accession 9/15/2011
IMMUNOGLOBULIN IgG 240L MG/DL (700-1600)
IMMUNOGLOBULIN IgA 10L MG/DL (70-400)
IMMUNOGLOBULIN IgM 31L MG/DL (400-230)