Pet Scan Results

We have gotten very bad news today regarding Sandi's PET Scan done Saturday. Because of what we were told and her overall medical condition now, we had a very difficult conversation with the doctor about ending all treatment. Sandi wants to keep going as long as she physically can and does not want to stop treatment.She expressed that wish very clearly so this is where we are at and what we plan to do tomorrow.

While the current chemo has slowed the growth of a few of her tumors, others tumors that were visible before on the scan back in the spring have increased significantly. The spinal tumor that was radiated in the summer of 2015 and had virtually gone away is now back. It is msaller than before, but has pulled itself back together and is growing. Not only that, but she has significant new tumors at various lymph node points through her body, along her right rib cage, a few other spots,  and an all new massive spinal tumor.

This new one covers her L3 and L4 vertebrae and then some and is attempting to compress her spinal cord and column in that area as well as shut down her colon, bladder, and kidneys. It is sufficiently big enough at this time that she could be paralyzed at any time. This explains why she is in such tremendous pain in her back, can hardly walk,  and having other issues.

The PET Scan found some other stuff that is also very bad, but the worst is the cancer news. As a result, we meet with the radiation doctor tomorrow and will make a plan for treatment. Last time it was 25 doses of radiation on a daily basis for five days each week. We expect that at the minimum she is looking at that again. Hopefully, we are wrong, but we won't know until the early afternoon appointment tomorrow.

They also have to determine what to do chemo wise. At this point she is far too weak to do chemo so the hope is the radiation will do something as a stop gap while they try to figure out what they can do chemo wise. Their chemo options are very limited and they need time to do some research and see if they can try a couple of things they have thought of at this point.

We expected bad news today, but not anywhere near the level we got it. Things are very grim, but she is not quitting and neither is her medical team or anyone involved in her care. The fight is not over yet. 

PET Scan Completed

There were significant complications today, but the PET Scan has been completed and we are now home. Patient and spouse are both exhausted.

Pet Scan Done

One never wants to hear that that the "drug product failed sterility test." That is what we were told about 10:20 this morning as we waited for the procedure to get going. We were already twenty minutes behind so we knew something was up as nobody had any sense of urgency at check in or anywhere along the line. That was because the check in folks already knew things were running two hours behind.

Once they finally got started, Sandi's blood sugar number was all the way down to 56 so that had to be treated and brought back up high enough to start the test. That took an hour.

Finally, they got underway sometime after 1--more than three hours late--and got it done. At least it is finally over. Theoretically, they will have the results tomorrow morning when we see the cancer doctor.

PET Scan Completed

After a more than 90 minute delay before they could find a nurse to access her port as well as issues with her blood sugar that resulted in a drop to 49 before they got that addressed, they finally got the PET Scan done. Hopefully, when we get the results late next week we will get good news.

We are both exhausted and hurting. Sandi because of all the time on the table. Me because of evil institutional chairs and falling twice. I also had to push her in a wheelchair through much of the hospital as they had no one available to help us.

Medical Update

Sandi was supposed to see the radiologist tomorrow for a followup appointment and to have the spinal tumor imaged to see if it had shrunk as we all hope. After some back and forth between everyone involved the appointment has been canceled at their direction.

Instead, the new plan is for her to see her regular oncologist on the 15th for the normal bloodwork and followup. At that point, depending on her blood work, they most likely will restart chemo immediately as well as schedule the PET Scan to do the full body imaging and look at her cancers.

MRI Planned

After further review it has been determined that Sandi has to have an MRI to check out a couple of the new spots that turned up on the Pet Scan. That should be scheduled in the next couple of days.

IVIG Completed and Pet Scan Results

Sandi had another round of the IVIG today and we are now back home. This is the stuff that is supposed to help stabilize her immune system and keep it from utterly collapsing yet again.

The results of the Pet Scan are inconclusive and a mixed bag. Some hot spots or tumors have vanished. But, she has new ones in places that she has never had them before. They want more time to take another look at the imaging, but it seems to be a bit of a wash as to whether or not the chemo is really working.

With no compelling reason to change things one way or another--at this point--she is scheduled for her next round of chemo in two weeks.

Pet Scan Friday

The Pet Scan is completed and we are back home. The results should be in by Monday afternoon so we should know where we stand on Wednesday before they do the IVIG.

PET Scan Done

Sandi's Pet Scan is now done. They are working on expediting the processing of the information so the cancer doctor has it early tomorrow morning for our appointment. Hopefully, it will show that the chemo is working on the cancer throughout her body.

Sandi Update

Blood work today indicated things are a little better so they left her alone and she did not have to have a blood transfusion. She is still having severe chills episodes and sleeping a lot, but those side effects should fade as she gets further and further away from the last round of chemo and blood transfusions.

We go back Tuesday for another check of everything. If everything is still relatively okay, they will start working on scheduling Sandi for another PET Scan to re-image the cancers and see how she is doing.

In the meantime, our weekend plan is to just hang out and relax with football games and Longmire if we can get streaming to work, and other TV stuff if it won't.

The Chemo IS WORKING!!!!!!

Finally home so I can post the news.....the results of the Pet Scan are that the chemo IS WORKING!!!!! Sandi still has a long way to go to get to any possibility of remission on a temporary basis, but this Pet Scan showed that there has been "marked improvement."

So, because of that and the fact her blood numbers were just good enough, they started chemo at Texas Oncology before sending her over to the main hospital. Admission there took four hours plus before they finally got a room for her. She is now admitted and they should be starting the second chemo drug late tonight.

She probably won't get out again until sometime late Monday.

PET Scan Finally Completed

Always a long process, the PET Scan took far longer to do today than previous ones. We don't know why. At least it is now done.

We wait for Friday and hopefully results that indicate the chemo is working.

PET Scan Results

The PET Scan results are in and they are not what any of us wanted, but they are as we expected. The chemo is working somewhat, but nowhere near where it needs to be to have any chance at all of pushing her into remission. So, the current chemo is stopped.

They need to figure out a new chemo treatment plan and see what Medicare will authorize. As it stands now, several options are being discussed with hopistalizing her for five day stretches of a time every three weeks or so the leading contender. But, there is also a possibility of a multi day outpatient deal as well.  Whatever is tried next will run for two chemo cycles and then will be held while they do a PET Scan.

So,  the plan right now is for her to come back next Thursday for a doc visit and blood work and prepared to be admitted to the hospital for a five day chemo stretch. This may change, but that is the plan for now.

We are not surprised by any of this and Sandi isn't giving up.

PET Scan Completed

The PET Scan for Sandi took quite a long time, but was finally finished. Hopefully, they will really have the results tomorrow when we see the doctor.

Medical Update

Further chemo is on hold while they work to get a PET Scan as soon as possible. As it stands right this minute, Sandi is scheduled for a doctor visit and probably admission to the hospital for the day on Monday while they do another blood transfusion. That will all be pushed back if they can get her in to do the PET Scan. We await a phone call....

Doctor Stuff

The last several days have been rough and today won't help. Later today we will be going down to Medical City Dallas Hospital and basically wasting our time and money because insurance is being massive stupidly. Aetna and their third party agent Med Solutions have again this month refused to allow Sandi to have her needed PET Scan here.

This is the same PET Scan she was supposed to have late last August down at Mayo on Jacksonville, Florida. That was her 100 day point. It was approved to be done there as it is  part of their standard post stem cell evaluation and treatment plan. Unfortunately, thanks to the blood clot in her neck that they sent her home with as well as the pneumonitis that quickly presented itself here requiring Sandi to be hospitalized last summer, she can't fly. She remains totally dependent on oxygen delivered by machine and portable canisters. Her need for those canisters means she is not cleared by her doctors here or the TSA to fly.

So, since she can't go there, Aetna and Med Solutions won't let her have it here. Instead, they will make her go through a CT scan and await for those results before they will consider the much needed PET Scan. We have zero hope or faith in anything that comes out of the CT Scan as that test has never once shown anything cancer related. She has had several since November 2011 when she was hospitalized most of the month while the doctors tried to figure out what was wrong. While it was later determined, thanks to the PET Scan, that Sandi had cancer everywhere but her eyes, brain, and jawbone, the CT Scans showed nothing.

Not only is the CT Scan worthless, the PET Scan would be happening if she were at Mayo. The reality is that they are not denying the test. They are denying this location which is necessary because of the treatment decisions and complications they previously imposed upon her.

To say this is frustrating does not begin to cover it. It is a horrendous waste of time, money, and equipment in addition to needlessly doing something to her that does nothing to help her in her fragile medical state or assess anything. When the CT scan comes back negative, we all know that we still won't know a damn thing.

Sandi and Mayo

She seems to be doing okay. They are now accelerating her schedule and hopefully it won't be too much too fast. She has a PET SCAN tomorrow morning, followed by blood work, some shots, some sort of pulmonary study, more blood work, and an injection of some type and a couple of other things. The last thing is supposed to be done around 4:30 tomorrow afternoon.

Then Saturday she starts a daily deal of blood work and injections and some infusion of chemo and something else. Apparently the week off she was supposed to have is now out the window and they are doing all the things they need to do as rapidly as possible so they can harvest stem cells.

The picture to the left she posted on Facebook today and it is of the sign for the "Davis Building." This is where her new cancer doctor is along with the various support services for cancer patients. She will be spending the majority of her time there.

By the way, if you are looking for her on Facebook she is listed as Sandi Tipple and she is the one in Plano, Texas. There are an amazing number of people with the name Sandi Tipple on Facebook.


We also learned late this afternoon that despite the fact that Wal-Mart is supposed to be covering her room charges--at no charge to us at all--the hotel is charging us deposit fees to cover themselves if Wal-Mart does not pay or she damages the room. $200 we thought we had has now been removed from our bank account as they took it for deposit. Done without any notice and so very uncool.

The picture below shows her kitchen and eating area at "The Inn at Mayo Clinic."

I don't think those chairs would hold me. More from her as I find out.....

Round Three--Day Two

Sandi is doing okay so far. She had one chemo drug last night and when that was finished early this morning, they started the blood transfusion. She says she got three units which is a heck of a lot.  Once that was finished she had to wait several hours and then they did the lumbar puncture deal and injected chemo directly into her spinal column. That meant she had 24 hours where she had to lie on her back or side and could not get out of bed.

Pet scan results are in and the cancer is in retreat. The two highest heat spots are at her heart and right hip, with a few other of lesser intensity scattered around. Apparently the cancer is breaking up and supposedly this is normal with the kind of chemo she is getting.


I'm absolutely exhausted and in incredible pain tonight from my back and left leg. Both hands are tingling pretty good as I write this so I won't be fooling with trying to catchup on e-mail tonight. It doesn't help that severe weather is supposed to roll in after midnight as I need all the sleep I can possible get. Hopefully it will weaken as it rolls in and all we will get is some much needed rain without hail and worse. I just can't deal with anything else. I am overwhelmed with everything.

More tomorrow.....

Pet Scan Done!

It took over four hours, but, the Pet Scan is finally done.  Not only does the test take awhile itself, they had real trouble getting her low enough to do it. After letting her have her meds and still not getting it low enough, they finally started giving her insulin shots to force it down. It finally got low enough that they could do the test.

There was some talk that the results will be expedited over the weekend so they have them on Monday morning. We shall see.

The Sandi Update

First and foremost, and I am sorry I neglected to mention this earlier, we barely made our rent thanks to your help. We are all very grateful. The rent has been paid and the check has cleared the bank so that major monthly hurdle has been cleared. Thank you!!!!

Sandi is doing okay as things continue along as they have been in recent days. Changing the meds seems to have helped with the nausea as it has not been as bad for her the last few days. Her biggest complaint now is that she has severe pain in the top of her right shoulder. Whether this is a flareup of the arthritis she has in that shoulder or something else we do not know.

Late this afternoon scheduling from the hospital called regarding the PET SCAN. Now that the insurance that denied it last week and reversed course this week approving the medically necessary deal, the PET SCAN has to be done as rapidly as possible. This means tomorrow morning at 9 we will be back at the hospital for the scan as they absolutely refuse to do it next week while she is in the place. At least it will get done finally. They really need the scan completed before they start the next round of chemo so we all have some idea if the chemo is doing anything.

This assumes they can even test her tomorrow morning. Since chemo started,  despite everyone's best efforts and lots of drugs, Sandi's blood sugars have been running from a tested low of 227 to a  killer high of 529. Tomorrow morning she has to be at 180 or lower for them to even do the scan. Something she never has hit during the entire time she was in the hospital. What this will mean for Monday and the planned start of round three of chemotherapy if they can't get her scanned tomorrow I have no idea.

Keep your fingers crossed she gets below their magical red line.....