Heads up: This is a long one.
On Tuesday, December 5, Teresa had her first mid-chemo CT. (She’s finished 3 cycles.)
We’d become concerned about her level of fatigue, and tried to get her an iron transfusion, but her previous blood transfusion had increased her iron levels enough to make her ineligible. But she was still very fatigued and feeling signs which she has come to associate with her anemia being worse.
So we scheduled an appointment with Dr. Musgrave, and the Cancer Center also then scheduled her for labwork to occur 15 minutes prior to the appointment. On the way down from Roanoke, T pointed out that it would probably be better to have the blood drawn before the IV contrast for the CT was done.
The CC said it was fine if we did the bloodwork early. So we dropped our stuff at home, and headed down to Bristol. We got delayed here, by the receptionist thinking we’d been taken back when we hadn’t. But they called over to CT, told them what was going on, and they said it was no problem. And since her port was already going to be accessed, they really didn’t need her there 30 minutes ahead of time anyway.
So we go over to CT, and that’s done pretty fast (once she goes back). And I ask before we leave if the results can be rushed to Dr. Musgrave so we don’t have to wait until (this coming) Tuesday. We’re told the scans are already available, the dictation will just take 1-2 days. (Or, as it turned out later, that day.)
So we go eat lunch, and when we’re close to being done, I have voicemail from Dr. Musgrave’s nurse telling us Teresa needs blood (no surprise) and we need to go to the hospital RIGHT NOW, and we don’t have to see Dr. Musgrave after all. Call if you have any questions.
I called right away because we’d specifically wanted to ask Dr. Musgrave a lot of questions. We guess her nurse didn’t realize that we’d requested the time with Dr. Musgrave.
They tell us we can see her the next day (Wednesday) at 2:40. We agree and we go to the hospital.
But when they drew her labs, they didn’t cross & match her. This will take an hour, it’s late, and they can’t do that *and* the transfusion, can we come back in the morning for the transfusion part if they do the cross and match now?
We say sure and they schedule her for 11:30a on 12/6. They call the CC back and get our 3p appointment with Dr. Musgrave back. They cross and match her and we go back to the CC. (Thankfully, these places are just minutes apart!)
At the CC we get a copy of the CT, and find this, “The uterus appears to be massive. It measures up to 17.9cm in cephalocaudad dimension x 10.6 cm in AP dimension and 17.3 cm transverse dimension.”
Given that you cannot regrow your uterus…
A.) The tumor has grown a fair bit and they mistook it for her uterus.
B.) They are referring to the cervix and it’s enlarged.
C.) It’s all fluid (Dr. Musgrave thought this may be the case).
D.) Something else altogether.
But I also have noted that the CT says that her pericardial effusion has increased since her last CT. Her last CT states, “no pericardial effusion”. So is this an increase from 0? New person reading the CT? Chest portion of CT got mixed up with someone else who has a port-a-cath (it’s noted on the CT).
If any of you can provide some insight here, we’d be profoundly grateful. I can easily cover her personal information and take photos of the CT to share. (It hasn’t come through the app yet so we only have a paper copy.)
We really didn’t get any clarity on if the chemo is working or not, but we did leave with various not good other impressions. And tests.
(The pericardial effusion led to T only receiving 1 unit of blood, even though with her hemoglobin being down to 7.3, she really needed 2 again. So she’s been doing as little as possible to conserve her strength.)
Dr. Musgrave had more labs done. In addition to the pericardial effusion. her pleural (lung) effusion has increased slightly. Dr. Musgrave didn’t think the pericardial effusion would be too much because she could hear Teresa’s heart very strongly with her stethoscope.
She said that some or all of the fluid could be caused by thyroid issues. I have read that a number of women have thyroid issues in menopause. Especially, it seems, those with surgically-induced menopause. So she ran a thyroid panel. She also ran another LDH panel, and another reticulocyte count. There may be others, but those are the ones I remember.
There is concern that Teresa is developing Hemolytic-Uremic Syndrome.
Based on the results of previous bloodwork, I’ve been suspecting that Teresa had hemolytic anemia, not (just) iron deficiency anemia and/or chemo-induced anemia.
Some of you know we became very familiar with hemolytic anemia, when our cat, Faden, was diagnosed with it. His treatment was a long course (on/off as he went into and out of remission) of prednisone. For Faden, this caused him to eventually develop chronic pancreatitis and diabetes.
Dr. Musgrave said they do not treat it in people the same way as they do in cats, which Teresa was glad to hear. She doesn’t want to have to take prednisone for anything unless she absolutely has no other choice.
Hemolytic anemia is when red blood cells are destroyed and removed from the bloodstream before their normal lifespan is over.
HUS is a disease characterized by a triad of hemolytic anemia, acute kidney failure (uremia), and a low platelet count (thrombocytopenia). It is USUALLY caused by e-coli, but can show up as a rare (and dangerous) side effect of Gemcitabine/Gemzar.
We know she has a severely low platelet count. Standard range is 150-400. Hers are less than 70. This can result in severe bleeding if the body loses the ability to clot.
We know she likely has hemolytic anemia.
We know that on her last CMP (complete metabolic panel), her creatinine was elevated. Standard range is 0.50 to 1.20 and hers is 1.22. Her eGFR (glomerular filtration rate) is 52. This test measures kidney function and tells your doctor your stage of kidney disease.
This is the first time that her creatinine has been out of range and the first time her eGFR has been an issue. I went back and looked at her previous CMP panels, and it was consistently >90, which is where it should be.
I’ve read several case reports about patients who developed HUS in reaction to Gemzar. It can easily be fatal. The majority of the ones who were able to be stablized had most of their issues reversed, but had to remain on dialysis – permanently. I’ve only found one so far who was completely cured of HUS.
We’re hoping that if she is starting to have HUS, that it was caught in time.
But what does this mean if it *is* HUS?
A.) She’d have to stop taking Gemzar, which was the key chemo drug, from our understanding, of the Gem/Tax protocol. Dr. Musgrave said she’ll probably need to consult with MSKCC. (I’ve also discovered that a number of places offer online opinions — such as Hopkins, MD Anderson, Dana Farber Cancer Institute, etc., so if this is a route that is taken, I’m going to suggest we get at least one additional opinion while she consults MSKCC.)
B.) Teresa is more or less immediately switched to a new chemo regimen – yet to be determined.
C.) Teresa stops chemo altogether. Gets a month or so to heal and bring her numbers back to where they should be (especially the ability to clot!) and has her second surgery. This would be to remove the remaining tumor and complete her hysterectomy (i.e. remove the cervix). Then after another 4-6 weeks, she would probably begin (adjuvant) chemo to reduce the risk of recurrence or metastasis.
Since Teresa receives gemzar on Day 1 and Day 8, she’s had it 6 times. She’s due for her next round this coming Tuesday — the start of Cycle 4. We both feel that until we know for certain, that it seems like a bad idea to keep taking it and potentially make things worse. She really doesn’t want kidney failure on top of everything else!
Here are a few of the questions I plan to ask on Tuesday:
Can we get approved (i.e. for insurance reasons) to have T’s tumor tested for specific mutations, to see if she’s a candidate for targeted drug therapy? We’ve read from a sarcoma specialist that radiation is recommended for tumors larger than 2″.
Reduces risk of recurrence. Why isn’t T having radiation?
I told T I was going to be one of those potentially annoying people that ask the doctor EVERYTHING.
No chances taken with Teresa on this. I’m getting ALL the information I can possibly get and learn as much as I can, so that we leave no stone unturned.
On Thursday, Dec 7th, Teresa had an abdominal ultrasound and an echocardiogram.
We have not yet received either of those results. We’re hoping it will shed light on the fluid situation, and hopefully about the tumor. The same woman who did her first abdominal ultrasound did this one too, and she told us that they all found it peculiar that the CT read, “massive uterus” since T had a hysterectomy.
Hopefully we’ll have a solid direction to go in after Tuesday morning. I’ll update as soon as I can.
Please feel free to ask if you have any questions.