Category: Graft vs. Host

It takes a village

Well, a team of doctors.

Reflecting on this whole week, we have had meetings with the following departments and doctor:

  • Stanford Ear Nose Throat (ENT): the tracheotomy tube to assist with breathing, and to take a biopsy of the throat.
  • Stanford Radiology: MRI and PET CT of the throat area
  • Stanford Blood and Marrow Transplant (BMT): to discuss graft vs. host disease and effects of transplant on relapse
  • Stanford Hematology Oncology: to discuss options for Leukemia growth in throat area and treatment options- radiation, chemo, do nothing
  • Stanford Radiation Oncology: to discuss options for radiation of the throat area
  • Stanford Palliative Care: to discuss ways to continue some sort of normal lifestyle while undergoing treatment
  • City of Hope Oncology: In addition, since Radiation Oncology is a new addition, we needed to set up a new patient appointment even though we have been at Stanford for over a year. Radiation Oncology requested the DVH – Dosage Volume Histogram of past radiation treatments. This did not exist in the records City of Hope sent to Stanford last year. I have used Grand Rounds and Picnic Health to help us gather medical records in the past, and they did not have it either. It appears that Radiation Oncology has its own data system and even though a full medical history has been requested in the past, their records were not included. Calling the Medical Records office at City of Hope took too long, so I contacted our oncologist directly who helped us get records over to Stanford. Thank you City of Hope!

I spent about 2 hours one morning coordinating the appointments around other commitments, optimizing the timing of each one. Palliative Care is scheduled after the meetings with Hematology and BMT. And Radiation Oncology is scheduled last since that is a final resort and we just want that team on standby in case we want to go down that path. Now on to gathering more data, more debugging, and finding a solution!

Busy week at Stanford!

As with all cancer battles, side effect maintenance is a must. This week in Side Effects, we have a closing throat, dry eyes, sore and dry both, and peripheral neuropathy. Our various doctors and specialist appointments are usually scattered, but looking at our schedule for next week, I found that we will be at Stanford almost every day (had to clear my Wednesday for a few immobile work commitments) to comprehensively cover everything that needs to be addressed! I found this view rather interesting and wanted to share.

Sunday MRI of the brain and larynx: About 8 months ago when my mom lost all her hair after chemo, she hit her head pretty hard on the edge of a table. At that time, it was painful but the pain slowly went away. Plus, we had other things to worry about, like getting rid of the cancer. Then recently, the head pain returned. We don’t know if it is related to the small trauma, or something else (like the repeated chemo in her spine or delayed side effects). After several visits to the oncologist and PCP and persistent pain, we all decided an MRI would be best. Then while there, since she also is experiencing breathing problems (had to take a trip to the ER at one point, but that’s for another post), we added on an MRI of the larynx. We think her throat is operating at 50% capacity due to some build up (maybe protein) of sorts. What this means is that the moment she has a cold or slight allergies, her throat basically closes up making it hard or almost impossible to breathe. For most of us, having some allergies or phlegm in our throats are no big deal since the throat has the capacity to handle it.

Monday Routine monthly oncology visit and labs: We see our bone marrow specialist once a month to check blood counts, overall health, and progression of Graft vs. Host disease. This usually means a quick health check, making sure blood counts are good, and adjusting medications (like prednisone and tacrolimus) as needed. And if we have time, a free added chair massage courtesy of Stanford Cancer Center!

Tuesday morning Eye Doctor and afternoon Physical Therapy: Both these visits are to manage side effects of the chemotherapy, radiation, and donor lymphocyte infusion (DLI). The DLI has cause graft vs. host disease in the eyes, causing them to be very dry and producing almost zero tears. The ophthalmologist has put in tear duct plugs to try to retain whatever tears her eyes do make, hoping that one day the tears will return. We see him about every 6 weeks to check in. The physical therapy appointment is in response to the peripheral neuropathy and weakness caused by the chemotherapy (most likely the vincristine). My mom loves her physical therapist Shannon, and both the strengthening exercises as well as the conversations they have help improve her health. She used to not be able to get up out of a chair or close the trunk of a car. Now she can do all those things.

Wednesday break day!

Thursday pre-op visit for the throat biopsy: Last Monday, we went to the ER because my mom couldn’t breath. Her throat had almost closed up entirely. With a camera in the throat, we discovered that some build up has been causing the throat to operation at about 1/2 capacity, making air intake harder. Her oxygen levels come back at 100% and her lungs are clear (Xray and listening), so we will do a biopsy to see what the build-up might be, and if there is a way to manage it. One of the ENT doctors think it might be Amyloidosis of the throat, but that is usually only seen in AML patients, not ALL (What my mom had). The oncologist and I are skeptical of the amyloidosis diagnosis, but we all agreed that a biopsy of the throat, taking about a 1-2mm sample, will help us decide.

Friday biopsy day!

One question I always ask at every step is What are the side effects of these procedures. If the MRI and biopsy will cause other complications, we need to know so we can make informed decisions about whether or not to proceed. We’ve been told that the side effects at trivial and the danger of not finding out the cause of some of these problems may be worse. It is always a trade-off of waiting to see if the body will take care of itself, or if we need to intervene is some other way. In this case, we shall proceed with more modern medicine interventions.

Graft vs. Host Disease (GVHD)… it is here!

Well, we knew this was coming, but had no idea how bad or good it would get. When my mom got her stem cell transplant last January 2014, she showed zero signs of graft vs. host disease. That was great because she didn’t have the crazy symptoms, but some doctors believe the lack of GVHD could have meant that the stem cells were not doing that much fighting. What is GVHD, you ask? It is when the new cells attack the body (the host). My uncle’s healthy white blood cells, in the process of fighting the Leukemia, also attacks the skin, the digestive tract, the mouth, and potentially other organs. Her current symptoms:

  • Dry, crusty eyes. In the evenings, her eyes start getting very crusty. By the morning, it is difficult to open her eyes. We are trying Refresh Tears to help lubricate her eyes and lessen irriration
  • Skin Rashes. Most of her upper body is covered in rashes. We have found fresh aloe to help with this. We have three Aloe Vera plants out front! Horray!
  • Dry mouth and throat. No matter how much water she drinks, her mouth and throat feels dry. This is definitely an attack of the mouth.  We have tried salt washes and coconut oil but nothing works. Today, the doctor subscribed a dexamethasone mouth wash to help with the irritation and inflammation.

We want some GVHD to happen to show that the infused cells are working (doesn’t seem very scientific, I know). We do not have any real way to show that the donor infused lymphocyte worked. All we can test for is if it does NOT work and we start seeing Leukemia cells again. So for now, to manage the symptoms in the body, we are doing the following:

  • artificial tears
  • dexamethasone mouth wash
  • aloe on the skin
  • keeping my mom busy walks, dinner parties, and excuses to make food!

Immunosuppressant: Sirolimus and Tacrolimus

We are currently at a stable state of 0.5mg Sirolimus and 1mg Tacrolimus. These are both immunosuppressant drugs. Their doses are adjusted twice a week, after the Complete Blood Count lab work reveals the chemical make-up of Mama Pham’s body. Too much of these drugs can compromise the health of the body’s organs as well as suppress the immune system too much, preventing it from fighting lingering cancer cells and other infections. Not enough immunosuppressants can increase the risk of Graft vs. Host Disease (GVHD). The goal is to have the perfect amount each day to suppress the immune system enough to prevent GVHD, but still keep the body healthy and strong with the ability to fight the bad guys.

Graft vs. Host Disease – The Happy Number of Stem Cells?

My uncle donated 8.7 million stem cells.  They said the minimum that they needed was 3 million.  They need at least 3 million to increase chances of the cells grafting, which means that the body accepts the cells and the cells start producing blood for the body – white blood cells, red blood cells and platelets.  They have a cap at 8 million because beyond that, there are increased changes for Graft vs. Host disease, which is a condition where the body attacks the cells because they are foreign.  Since I mom got over 8.0 million cells, I naturally had questions.  The best response I got was (paraphrased):  Well, studies show that 8 million is max, but 8.7 million isn’t that much more (that’s almost 10% more!) and we think it will be ok.  We want to increase her chances.

So here’s to the cells grafting, the body accepting all that is done to it, the bone marrow making new cancer free blood cells, and my mom never suffering Graft vs. Host Disease!