3rd Round of Chemo starts with Neutropenia

It's been almost a week since I've had the chance to update the blog!

APPOINTMENT WITH LOCAL ONCOLOGIST: 

Todd's Thursday, February 5, 2015 appointment with the local oncologist went well. His doctor hadn't left for his trip to climb Mt Kilimanjaro yet (leaves on Sat). Todd's counts were stable and no transfusions were needed. His hemoglobin went to 9.1 and his platelets to 29,000 which was good, but his Whites and ANCs were still low. 

We talked about whether to proceed with the Vidaza on Monday or not. The Dr. said that his BMT doctor in Cleveland is the quarterback calling the shots, which in her opinion is treating if ANCs at .500 or greater. The local oncologist said he wasn't quite comfortable with that and likes the ANCs to be around 1.0 but has proceeded with counts of .7 or .8 in special circumstances. 

Todd had a good day on Friday. Saturday we got up early and took our daughter to her second college visit in Columbus, OH. While the campus we toured was compact, there will still a good amount of walking and stairs to climb.  It was  a long day. Even though he was wiped out, he was glad he got to go.

On Sunday, I made him stay home to rest while I took our youngest daughter to a volleyball tournament. These things are crazy!  They are fun to watch, but they are all-day!  We left at 7 am and got home at 8:30 pm!  It's loud with screaming, cheering, and whistles from about 8 courts blowing at every point!  You're in one building with about 300 people, so it's not an ideal place for him to be. I was happy he trusted my advice as his caretaker to stay home and rest up for his chemo treatment the next morning. 

Needless to say, I was exhausted and I'm healthy!  So Todd went to his chemo appointment alone so I could sleep-in.

 FIRST DAY OF CHEMOTHERAPY: MONDAY, FEBRUARY 9, 2015

His first chemotherapy appointment routinely starts with a CBC to check blood counts before starting the chemo. For some reason (Todd said they weren't busy), his regular nurse at the local Cancer center DID NOT wait for the results and started treatment anyway. Todd didn't stop her. Once the treatment was already running, the results came back with his ANCs at .300!  Todd told her then that he wasn't supposed to get the chemo with his ANCs below .500, but she said there was nothing in his file that stipulated that. I would think she would have known better! She should have waited and asked the doctor on call or something before treating!!! (And the doctor wonders why we prefer treatment at the Cleveland Clinic).

I was so upset and concerned when he got home and told me what happened. He was upset but not for the same reasons: he felt like what choice did he have?  He could not get the chemo and then risk the disease growing stronger and jeopardizing the second transplant or he could get the chemo and maybe get an infection or neutropenic fever.

I think this has been the most devastating part of battling MDS. You have so few options available, and most are just the best they know of or have. That is why the research trials are so important. There are a few treatments they know that work, even in trials, but nothing is long-term. Oh, how we need to pray for a new cure!  The only "curative" long-term treatment is the bone marrow transplant and we have learned, there is no guarantee that it will work. 

I stay in touch with several patients and families we met on the transplant floor while Todd was at the Cleveland Clinic.  Very few are doing well.  One friend who had MDS and stopped responding to Vidaza, had her transplant but has had complications with her chimerism too.  It was going in the right direction at first (her brother's donor cells were increasing), but then it started to reverse (her cells were increasing while the donor cells were decreasing).  Her two bone marrow biopsies post-transplant have confirmed that no disease is present (PTL!), however, they still needed to boost the number of donor cells.  She had a perfect match donor in her brother and also had no Graft versus Leukemia Effect after transplant.  She had to go in last week and have a new port put in her chest, and then received a mini-Donor Lymphocyte Infusion  (DLI) from additionally harvested stem cells from her brother.  No immosuppressions are given, so she is at risk of developing a serious case of Graft versus Host Disease (GvHD).   They are waiting for two weeks or more to see what happens.  If there is no severe GvHD, then they will give her another mini-DLI from additional stem cells they froze.  This process may have to happen several times.

Another friend contacted Todd this week to say he was back on the Transplant Floor with a case of RSV (Respiratory Syncytial Virus), which I have heard of in babies and the elderly.  And another friend has called for the last two weeks with updates about her husband.  His first biopsy was clean and his chimerism was at 98%  everything was going great, even though he had not experienced any GvL Effect from his unrelated perfect matched donor.   Then he got Cytomegalovirus (CMV), which immune-compromised people are highly susceptible to and his numbers dropped.  They treated him with strong antibiotics and it went away, but they couldn't get his counts to stay high enough to avoid weekly transfusions.  He was there for transfusions and a second biopsy to see if his Acute Myeloid Leukemia had returned.  He passed out and they got him in a wheel chair but soon after, half of his face started to droop and he couldn't remember the month or date.  They sent him to the emergency room, fearing he had had a stroke, but they found out that he had a Intracranial hemorrhage instead likely caused because of his persistent low platelets.  They had to take him to surgery immediately to drain the blood and relieve the pressure from his brain.  He was admitted with a drainage tube for several days afterwards getting platelets transfused every day.  While he was there, they took samples from his peripheral blood to see if his disease was back and found blasts cells there at 10%.  They started him on Vidaza the next week and I think he has gotten to go home for now!  

I had heard that there could be internal bleeding from severely low platelets, but I didn't know anything about Intracranial hemorrhages.  I did a little research and learned that this is not uncommon with patients with hematological  diseases, especially ones that cause low platelets (>10,000 or >20,000).  According to research, it is the second most common complication after infection. (Chen, 2012, background).

As you can tell, its not just Todd that is struggling post-transplant.  

Back to the appointment:

I put a call into his BMT Doctor in Cleveland this afternoon, and she confirmed that they are more aggressive at the Cleveland Clinic and she would have told them to proceed with the Vidaza had she been there anyway.  She did advise that Todd start taking his Cipro antibiotic right away, watch what he eats observing a neutropenic diet  (See http://www.lls.org/diseaseinformation/managingyourcancer/treatmentnextsteps/foodnutrition/neutropenicdiet/) within reason, and for him to try to be content staying at home, or at least limit being around crowds because there is so much still going around right now that he can catch.

The good news was his hemoglobin was 9.0 and his platelets were at 81,000. It looks like he received a boost from the transfusions and maybe a bounce from the second round of Vidaza.  At least these higher counts may help him have some energy and keep any serious threat from low platelets at a minimum for now. 

We are back to taking his temperature twice per day, watching for any signs of infections or neutropenic fever.  The doctor reiterated the need to go to the emergency room with any fever over 100.4.

So, please pray he gets through this week without too much fatigue, without a fever, and without any infections.   

Read more:

Chen, Chien-Yuan, Tai, Chan-Hwei, Cheng, Aristine, Wu, Hung-Chang, Tsay, Woei, Liu, Jia-Hau, Chen, Pey-Ying, ... Tien, Hwei-Fang. (2012). Intracranial hemorrhage in adult patients with hematological malignancies. (BioMed Central Ltd.) BioMed Central Ltd. Retrieved from: http://www.pubfacts.com/fulltext/22931433/Intracranial%20hemorrhage%20in%20adult%20patients%20with%20hematological%20malignancies.

A Chat with the BMT Doctor clarifies Results and Treatment

We received a call back from Todd's BMT Doctor this afternoon, Wednesday, January 7, 2015.  She is assigned to doing rounds on the BMT floor at the Cleveland Clinic. 

I asked her to help clarify Todd's latest chimerism study results.  The results indicated that cells captured in the peripheral blood showed 50% of cells from Todd's original bone marrow.  When isolating just the T-cells, which are his fighter cells, from the blood, they found 24% were from his original bone marrow.  I was confused which number indicated the overall percentage of Todd's cells, knowing the remainder would be the donor cells.  Was it 50% Todd's original marrow and 50% Tom's donated marrow? Or, was it 24% Todd's marrow and 76% Tom's?  Apparently, it isn't so cut and dry.  Todd's overall chimerism is at 50/50 and the T-cells are 24/76.  Either way, these results are better than what they were prior to his first round of post-transplant Vidaza treatment, which was 60% Todd and 40% Tom's cells. 

When I asked if the chimerism could be totally reversed to 100% donor cells at this point with just Vidaza treatments, she agreed with his local oncologist that it would be highly unlikely.  While the Vidaza may continue to reduce or kill Todd's original marrow cells, it would never be able to be fully reversed if cancer cells are still present, which includes any amount of those fighter original T-cells (the second count) from Todd's diseased marrow. The Vidaza is helping with the chimerism, but it is mainly limited to killing the blast cells and attempting to reverse the 5q chromosomal deletion he currently has. 

I also asked her to distinguish between a Donor Lymphocyte Infusion (DLI) and a second stem cell transplant and which she was planning to do after the treatment rounds of Vidaza.  She said she wasn't sure just yet; everything depends on his chimerism and whether his MDS can get put back into remission.  She said she is anticipating doing the second stem cell transplant with some type of chemotherapy to suppress his bone marrow and cells.  She doesn't think the DLI would be successful or effective if any of his own marrow still exists, because the diseased marrow/MDS is still too strong and would likely kill off the DLI cells.

She was pleased to hear that he didn't need any transfusions this week and that better arrangements had been made to get his transfusions done sooner while we are in Dayton. 

All of these detailed, technical medical terms and procedures are enough to make your head spin!  Todd's local oncologist asked me if I had now become a nurse since I've learned so much throughout his care and treatment!  I wish!  If I was about 20 years younger, I would love to study medical research.  There is so much going on in the medical field now, especially in the field of genomics, isolating causes and finding new drugs or treatments.  There has been some great success with some types of leukemia with medication like Gleevic and programing T-cell fighters. There isn't much to offer MDS patients at this point, except the great success they have had with the medication, Revlimid for patients with the 5q deletion.  Since I don't want to start medical school (ha ha!), the least I want to do is to help raise money for the MDS International Foundation and/or the Leukemia and Lymphoma Society.  These organizations help to fund and organize clinical trials and medical research for new treatments and medications.  I will, someday.  When the time is right.

Todd is still suffering from his frozen shoulder.  Not much seems to help.  He looks so helpless unable to use his arm!  He's feeling a bit run down, so I plan on tying him down and keeping him in the house resting all day tomorrow.  Its going to be so cold here, that even a healthy person shouldn't  be out unless they need to.  The girls are off school because of the dangerous temperatures, and Abby hasn't returned to Cincinnati to resume her college classes yet. So, the plan is to hunker down!  Stay warm!  God bless you!  We appreciate your prayers and support.

Day 112: Local Oncologist; No transfusions needed

Tuesday, January 6, 2015 found us at the local cancer center in Dayton to have Todd's CBC drawn to see if he needed any transfusions and to connect back with his local oncologist. 

Praise God, no transfusions were needed. As a matter of fact, his counts were good!  His hemoglobin was stable at 8.9; platelets at 16,000, and his whites were high (for Todd) at 3.5 or 3,500!!! (Normal range on the low end is 3.8). His ANCs were normal at 2.6. The whites and the ANCs help Todd fight infection, which is so important right now with so many viruses and the flu going around. 

Todd complained to the doctor about his last CBC and the long wait (5 hours)i in getting an order and setting up his platelet transfusion, which had to be done the next day at 7 am. The doctor said that should have never happened and suggested that we go to the other location at the Cancer Center at Miami Valley South Hospital. That way he can have his blood drawn along with a type and screen and if needsa transfusion,it can be done right there at the hospirL. So, every Monday that he doesn't have chemotherapy, he will go to the Miami Valley South Hospital Cancer Center for blood work.  The chemotherapy though at least for next week will be done at the same location. 

The doctor asked what options for treatment his BMT doctor in Cleveland was considering. We talked about the possible use of Revlimid medication that is used successfully in 5q deletions alone. We talked about using an unrelated donor instead of his brother for the second transplant and/or donor lymphocyte infusion (DLI). He is always very respectful of Todd's BMT doctor,but still engaged us in discussion about it. 

Earlier in the morning, Todd got his last Chimerism results posted to his "My Chart". It showed that Todd's original cells in his peripheral blood was at 50% and the amount found in the T cells was 24%!  This is a huge reduction from the last results that had him at 60% and his brother's donated cells at 40%. I have requested that his BMT doctor in Cleveland call us to explain these results. We briefly discussed them at his appointment today and asked if this change could be attributed to the Vidaza working and if it could result in giving Todd the full donor cell chimerism he needed to bring his donor cells to 95-100% and Todd's 0-5%. His opinion was that Vidaza can only attack the immature cells once they are produced, but it cannot target the mother cells that keep producing the bad cells. Only new transplanted bone marrow could do this. But, he agreed that an additional DLI of his brother's stem cells could allow his brother's marrow to get the upper hand and it could help to produce some Graft versus Host Disease needed to wipe out the remaining original marrow. 

He didn't act surprised that Todd didn't develop any Graft versus Host Disease with using his brother's perfect matched bone marrow. That's why he raised the question of his BMT doctor using an unrelated donor next time. I told him I had asked her the same question: Was Tom's marrow too much of a perfect match, that Todd's body did not offer any resistance to it, especially with the immunosuppression therapy that was applied?  I gave him her explaination about having three marrows might not be the best choice right now.  We also explained that she is taking everything slow and carefully weighing each treatment decision according to Todd's changing condition week by week. 

We go back to see him in a month. Meanwhile, the second round of post-transplant Vidaza chemotherapy starts next Monday, January 12, 2015. 

I'll come back and edit this post or write an update once I get some clarification from his BMT doctor when she calls us back. 

One note: the oncologist today had my back and got onto Todd about doing any manual labor or activity. Even though he may have good days when he feels like doing chores around the house or yard, he still needs to be cautious. Any fall, bump, or injury could cause internal bleeding with such low platelet counts. 

We also discussed his frozen shoulder pain and told him he could take some Tylenol and/or the oxycodone (that doesn't work for Todd) but absolutely NO ibuprofen. He was also willing to send Todd to get physical therapy if it was no better. He didn't think or know of any relation with the flare up and low platelets.