It is with great sadness that we report that our dad Mario is seriously ill and has been entered into the hospice program. On Saturday, Feb 14th we took him to Arundel Medical Center where he spent 10 days – half of which were in the critical care unit. He fell ill very quickly – within hours after having held a meeting at Goddard on Tuesday, Feb 10th.
Exhaustion, lethargy and mild confusion took over and by Saturday it was bad enough to warrant the visit to Arundel. Upon arrival we discovered he had a fever and his blood work looked very bad. His blood pressure was very low, his INR (measure how how thin your blood is) was off the charts, his calcium levels were very high and he had an irregular heartbeat. He had just begun a new chemotherapy regimen but had to be taken off due to his condition. He was just too weak to continue.
For 10 days in the hospital Mario received multiple treatments to bring his blood pressure up, his blood counts back to the normal range and his calcium down. Upon leaving the hospital on Tuesday, Feb 24th most of his levels were in the acceptable range, however the damage had been done by the rapid progression of the disease. Despite a valiant fight by Mario we came to realize that we were running out of time. The decision was made to take our dad home and place him in the hospice program. Our main goal is to provide comfort, peace and a loving family surrounding where he can spend his final days.
We met with his oncologist as a family today for a final consult – for understanding and closure. We asked about the possibility of recovery from this stage of the disease and were offered little hope. When pressed about how much time our dad might have left, we were told a matter of weeks. All patients are different of course and we are certainly clinging to the hope that a miracle could happen. Dad is just stubborn enough to hang around until the county re-asseses the house in 3 years.
Thank you all for your continued support and prayers. Fortunately for us, our parents raised a strong family to help lend support in trying and difficult times like these. That helps. We know our dad touched so many people’s lives and we should all strive to learn and lead from his example. He is an incredible father, husband and friend to us all. May God bless him and keep him.
The Acuna Children
I must apologize for not updating the blog for quite a few months. The last few months of 2008 were difficult for the Acunas. Unfortunately, I fell down about 12 steps outside my health club and broke my wrist. I also had a lot of bumps and bruises and my neck was sore. I had PT for my neck and the cast on my wrist came off the day after Christmas. I am now undergoing 6 weeks of PT to improve my wrist rotation. Since I broke my right wrist and I am right-handed, writing and e-mailing were difficult. So, that is my excuse …….we tried to update friends and family in our Christmas letter.
NOW for an update……..Mario recently completed his 3rd round of chemo (cytoxan, thaliomide and dex). This round lasted 4 months and was quite aggressive. He endured the various side effects and was usually quite tired, but continued to work when he was able. Around Thanksgiving, he also developed a terrible cough which persisted for more than a month……..as well as a stomach virus. He lost some weight but seems to be regaining some of the lost pounds. To add to everything else, he developed an irregular heartbeat and now we have added a cardiologist to our long list of doctors. He is on Coumadin and another med to control the heartbeat. Coumadin must be closely monitor.
Last Monday the oncologist performed a bone marrow biopsy to determine the percentage of cancer cells in the bone marrow. When this procedure was performed in the summer of 2008, the percentage of cancer cells was at 90 percent. The number came down to 20 percent this time…..great news! Now, the decision is what do we do next? Since the cancer is aggressive, it will return and already the IGA number is increasing. So, Dr. Selonick is going to talk with Dr. Huff at Hopkins, who is an expert in the field of MM. Stem cell transplant was mentioned but might be ruled out due to physical limitations and age. The desired age is under 70 and Mario will be 69 in March. It seems that each chemo session kills the less aggressive cells but is unable to kill the more aggressive cells. This is the case in a lot of cancers. That is what MM researchers are attempting to discover…find a way to get rid of ALL the cancer cells that will come back in time. They are studying combinations of meds and well as developing new meds to fight the disease.
We will meet with Dr. Selonick next week and will proceed from there. I promise to keep everyone better informed and thanks, as always, for continuing to give us the needed support that keeps us going. We appreciate all of your phone calls, e-mails, thoughts and prayers. HAPPY NEW YEAR TO ALL…here’s to health and happiness in 2009!
Our lives have been very busy lately and it’s been difficult to keep up with the blog. Mario’s 3 sisters were here from Argentina and we’ve been visiting with our kids and grandchildren and doing some sightseeing. We also spent a few lovely days at the beach house in Ocean City. It was a very pleasant visit and took our minds off of doctors and pills for awhile.
A few Thursdays ago Mario developed a fever (again) after his last round of chemo. We called the doctor and were told to have it checked out at the ER. So, at 8Pm we were off to the Anne Arundel Hospital ER to sit and wait to see the doctor and have tests and more tests. The tests showed that ANOTHER urinary infection had developed but this time they decided to release him. This was due in part to the Neulasta shot that was administered the day after his last chemo. The shot prevented the white blood cell count from going as low as last time. The doctor felt that his count was on the way back up and it could be treated with oral antibiotics at home. Before we left the hospital, they gave him an IV of antibiotics. So, we returned home at 3:30AM……..Mario’s sisters were due in the next morning and we were relieved that Mario was able to greet them at the airport rather than the hospital.
The next day, we had an appointment with Dr. Selonick. He seemed to feel that the shot had done its job. We now have 2 more rounds of the aggressive chemo to endure but are enjoying a 2 week break. We don’t have any results from the 2nd round of chemo….yet.
Mario recently had a bone scan and it showed a few lesions in the skull whick will close up with the reduction of the IGA level. He has had a pain in his left leg near the hip bone which make walking any distance very difficult. Dr. Selonick has ordered another x-ray.
Thanks to ALL for your continued support………….
Mario underwent another round of chemo this week. We spent about 20 hours at the oncology office from Wednesday thru today. I think that I’m more exhausted than Mario. Thank goodness that Annapolis Mall is right across the street!
The GOOD NEWS is that Dr. Selonick stopped in to tell us that the protein count was cut in half after the first round of treatment. It went from 6,000 down to 3,000. We were most happy to hear that news!
Today Mario received a medication to strengthen his bones as well as a shot of Neulasta. Neulasta will increase the white blood cells in order to fight any infections. Neutropenia landed Mario in the hospital last time, but hopefully this shot will prevent that from happening this time.
Mario is feeling OK right now but it often takes several days to feel the effects of the chemo. Thanks to all who have been so supportive with your emails and phone calls. We are so fortunate to have a wonderful family and friends at this difficult time!
Mario had his 2 full days of cheno on the 4th and 5th of September. They were 2 LONG days but we made it through. He was quite tired over that weekend and into the next week. He had a good appetite but spent most of the days resting or reading. We went to see Dr. Selonick, the new oncologist, on September 12th. At that time, Mario’s red and white blood cell counts were very low. He received an aranesp shot for the red cells. The white blood cell count was PANIC low. We were warned to watch for fever above 101.4 and call immediately if this should occur. Mario was a little chilled later in that day and after dinner we took his temperature. It was 102.6 so we called and were told to go to the ER immediately. We left dinner on the table and ran to Anne Arundel ER. Of course, we had to do all the admittance neccessities…..insurance, health info as well as blood tests and an x-ray. Then we were told to sit in the waiting room. We immediately came back out into the hall to wait as we were surrounded by sick people in the waiting room. It didn’t seem to matter that Mario was neutropedic. We were finally shown to a room in the ER where they told us that the fever was due to a urinary infection. Mario was finally shown to his room at 3AM.
He was hooked up to an IV of antibiotics for the low white blood cell count. They also decided to give him a transfusion as he was having difficulty breathing due to low oxygen. He received 2 bags of blood over a period of 6 hours. By Thursday, his white blood count was heading up and his fever was gone. They kept him until Friday just to make sure and he was released yesterday afternoon. He is feeling much better with “new blood” and continues to take antibiotics for the infection. We will see Dr. Selonick on Tuesday to determine what the next step will be. He is due to have another treatment next week but it might be delayed???? We found out afterwards that there is a shot that can be given before the chemo to help with the low white blood count……..where was the shot when we needed it? We are so grateful for the wonderful care that Mario received at Anne Arundel Medical Center……it should be a model for hospitals everywhere. Thanks, everyone, for your continued support!
Mario has completed 2 days of the new regimen of chemo. We were at the oncologist’s office all day Thursday and Friday. They split the 11 hours of treatment into 2 days so that it could be given in the office rather than a hospital. Most of those hours were spent hydrating the patient to prevent kidney damage.
Unfortunately, the calcium count is up but with medication went down 2 points. This indicates kidney damage. Mario’s red blood cell count is also down but he was given a shot of arenesp to help bring it up. Dr. Dushkin called us on Monday with that news so Mario had to go in for treatment. We are returning on Monday to do blood work and to check the counts. There is a possibility of a blood transfusion, if necessary. It seems that we are working against the tide as everything that we are trying to accomplish is being delayed by the treatment which lowers blood counts and can cause kidney damage. The treatment is part of the problem, if that makes any sense……….
We went to see Dr. Dushkin on Tuesday and came to a treatment decision. The decision was based on Dr. Huff’s recommendation and agreed on by Dr. Duskin as well as ourselves. The treatment will include thalidomide, cytoxan and dex. The thalidomide must be specially ordered and delivered and signed for in person. It is due to arrive tomorrow. It is in pill form as is the dex. The cytoxan will be administered in the oncologist’s office in Annapolis. The treatment will be delivered in 2 days as it takes 11 hours. Most of the time is spent hydrating the patient as cytoxan can damage the kidney. Kidney damage is just what you DO NOT need with Multiple Myeloma. We begin tomorrow for 6 hours and 6 hours on Friday. I will tag along to make sure all is going well and that Mario gets lunch. Their office is located right across from Annapolis Mall….
Dr. Dushkin was on the phone at 9:00 this morning with the results of Mario’s blood work, which was done in the office yesterday. It seems that his calcium count is up, which can damage the kidneys. She told him to come into the office to receive a 4 hour IV of pamidronate to strengthen the bones. He also received a shot of aranesp to bring up the red blood cell count.
We were introduced to Dr. Selonick, who will be Mario’s new oncologist. He has been with the practice for quite some time and has known Dr. Huff for 10 years. He also served as the chief of residents at Hopkins. He has quite a few Multiple Myeloma patients and seemed very optimistic about making the disease a chronic condition. He was most impressive.
So, we begin another adventure tomorrow….we still are in need your prayers and good wishes…………………
We must apologize for not updating the blog for quite some time. To give you a quick update, Mario has completed 8 months of chemo and continues to work and feel well. The beginning of August, Dr. Dushkin performed a bone marrow biopsy, which is a very good indicator of the state of the disease (Multiple Myeloma). A needle is placed at the base of the spine in several different locations. Unfortunately, the results showed that 90 % of Mario’s plasma cells were cancerous. These cells were arranged in sheets. At the same visit, Dr. Dushkin told us that she is leaving the practice to return to Fox Chase Cancer Center in Philly. We were quite devastated.
So, it’s back to the experts again to determine the next best treatment. First, we went to see Dr. Bodras at the Unoiversity of Maryland Medical Center in Baltimore. He was quite preplexed that Mario is feeeling so well and continues to work. Mario also had very few side effects from the chemo. Dr. Bodras came up with a combination of 6-7 drugs that would be given in combination during a 4 day hospitalization. This is a “hit you over the head” type treatment. He wants to knock the cancer out quickly and aggressively.
Second, we visited Dr. Huff at Johns Hopkins Medical Center in Baltimore. She is a much calmer person who leaves you feeling more optomistic about treatment. She suggested a combination of 3 drugs….thalidomide, dex and cytoxan. Cytoxan is an alkalizing agent which Mario took orally previously. She felt that he needs to take it at a higher dosage intravenously. This is also a very aggressive regimen but is given as an outpatient. It is administered once every 3 weeks for 11 hours…..this might have to be done in a hospital setting as the oncologist’s office isn’t open 11 hours. There could be kidney damage with these meds, so most of the 11 hours is spent hydrating the patient. The chemo is delivered in about an hour.
We return next Tuesday to see Dr. Dushkin and make another BIG decision. This disease has many decisions to make along the way as even the experts don’t agree. Often, there is a lot of luck involved in hitting upon a combination of drugs that work for that particular patient. Your prayers are asked for at this difficult decision time….help us to choose the right path to remission! Thanks to all for your support…………..
Mario went to see Dr. Dushkin yesterday for his monthly progress report, based on recent bood work. Dr. Dushkin walked in with a happy expression on her face, which usually indicates good news. Mario’s IGA count has dropped to 1,629 (lowest ever) ! He is still on the combination of Dex, Velcade and Cytoxan (round 2). While on Revlamid during his 1st chemo treatment, his IGA count dropped as low as 1,700, then plateaued and rose to 2,500. His white blood cell count dropped very low, therefore, it was necessary to take him off of this regimen of meds.
Dr. Dushkin was able to contact Dr. Bodras of the University of Maryland Medical Center while Mario was getting his chemo treatment. We had recently consulted with Dr. Bodras concerning a stem cell transplant. Bodras suggested that we proceed with 2 more rounds of chemo (Velcade, Cyntoxan) and then talk about freezing stem cells. They prefer to take the stem cells while they are the healthiest. The stem cells can then be stored and used at a later time, if necessary.
Dr. Dushkin also wants to do a bone marrow bioposy to check the level of plasma cells. This is an outpatient procedure which gives a very accurate reading.
Mario has been feeling well and continues to work at Goddard every day. He is unable to travel but seems to be content to stay here. Perhaps that is due to the unpredictable and very expensive airline travel these days. He has regained much of his energy and is back to doing chores around the house and at the beach. He has been cleaning gutters as well as power washing decks. I try to keep him from over-extending himself, but have found it an impossible task. Recently, we were at the beach and out the window I can see the ladder extending up to the roof. I found Mario on the front roof cleaning out the gutters. Broken bones are a real possibility with MM. Perhaps we need a tracking device to monitor his activities…..thanks for your continued support!
It has been quite some time since we updated the blog. Andrew started the blog but it seems to fall to me to do the updates, even though I’m not good at the the medical lingo….I’m learning.
Mario was on the Revlimid for 6 rounds. Unfortunately, he became neutropenic due to his white blood cell count going very low caused by the Revlimid. Therefore, the oncologist had to take him off of these meds until the white blood count recovered. He has now recovered but had been off of the meds for about 3 weeks. He is due to start a new round of chemo this Monday-Dexamethasone, Velcade and Cytoxin. He is to stay on this for 2-3 rounds and then we must make a decision about stem cell transplant. The doctors seem to be pushing for this, but can’t give us any encouragement that the transplant will be successful in fighting his particular case of MM. We are thinking about making another visit to check with the experts at Hopkins and the University of Maryland. It is a most difficult decision as the recovery takes from 6 months to a year…………….
Mario’s regular dentist took x-rays and discovered a cyst in the gum behind his front teeth. He had a CAT scan and it appears that it is not a lesion from the MM or a growth. He has an appointment tomorrow to discuss the results with a dental specialist in MM at the University of Maryland Hospital. The administration of the chemo depends on whether or not they feel that the growth should be removed. The chemo messes with the blood counts and they can’t risk infection. So, there are lots more decisions to make……….we will try to do a better job updating the blog. Thanks for all your well-wishes.
Mario has now completed 4 cycles of drug therapy (Revlimid/DEX) and the protein level plateau reached is 1,700 from an initial reading of 6,000. Dr. Carol Ann Huff of Johns Hopkins and Dr. Ashraf of the University of Maryland Medical Center presented 2 different treatments options. Dr. Huff was of the opinion that a transplant would not result in significantly improved results as compared with just continuing drug therapy. She suggested incorporating Velcade at a stage where Revlimid ceases to be effective. Dr. Bodras regognizes the limited benefits of a transplant but proposes a much more aggressive approach, with a Velcade/Citoxan/DEX “cocktail” followed by an autologous transplant. The risk factors associated with the transplant are not well defined or supported but appear to be in the 5% morbidity range. The end point appears to be the same, the only difference being how it is reached and what risks are associated with the process. We have chosen to proceed to stem cell collection but not necessarily follow it by a transplant.
Mario is now beginning his 5th cycle of Revlimid/DEX therapy. The combination will continue to a 6th cycle when another decision has to be made (depending on how the meds are working). This will be determined by the rise or fall of the IGA protein level. Preparations will be initiated for a stem cell collection. The stem cells will be frozen for possible use at a later time. The decision as to where the procedure will be performed must be determined, whether it will be Johns Hopkins or the University of Maryland Medical Center. Decisions, decisions…..
Today we went to Johns Hopkins Hospital in Baltimore, Maryland to see Dr. Carol Ann Huff who works in conjunction with Dr. Matsui doing stem cell transplants as well as Multiple Myeloma research. The team was highly recommended and are experts in the field of Multiple Myeloma research. We are at the point of decision as to whether to go into the transplant mode or continue with front-line medications. Mario has a more aggressive form of Multiple Myeloma as determined by chromosome changes and a high protein level. His IGA Kappa level was 6,000 while hospitalized and has decreased to 1,700. This level (1,700) has remained the same for 2 months. Therefore, Dr. Dushkin (oncologist) wanted us to see some experts in the field to determine where we go from here.
Dr. Huffwas very professional as well as very personable. She initially asked many questions about Mario’s general health, family history as well as tolerance to the prescribed meds (side effects, etc.) She presented to us the pros and cons of a stem cell transplant. Studies show that the survival rate for both (stem cell transplant and meds) was 98% after 2 years. Studies have also shown that the chromosomes 1P and 1Q as well as chromosome 13 do NOT benefit from transplant. There is at least a 6 month recovery period after transplant as well as risks along the way to recovery. Dr. Huff’s opinion was that Mario would NOT benefit from a traditional stem cell transplant. Instead, her suggestion was to stay on Revlimid and Dex for another 2 months to determine if the IGA protein count will decrease. If the count goes up, she would add Velcade to the meds. There will be additional side effects, but most patients tolerate them well. If the meds stop working after time, there is still the opportunity to do a transplant (auto or sibling). According to Dr. Huff, the number of transplants being done is decreasing and there is more reliance on front-line meds to attain the same results.
We are also going to the University of Maryland Hospital in 2 weeks to get another opinion from Dr. Badros who is a proponent of stem cell transplants. Then, it is left up to us to make the final decision. Any comments or suggestions would be appreciated. We will try to keep up with the blog in a timely manner and we thank ALL of you for your continued support. Keep the prayers coming…………….
Dad visited Dr. Dushkin for blood work on 12/26 and then again on 1/2. The visit on 12/26 showed his white blood cell count at the low end of normal – at 4.8 – which is great news. This was after an off-week of taking the Revlimid. This week’s blood work the WBC went back down to 2.4. The WBC is showing an up and down pattern which matches the Revlimid treatment.
Dad’s RBC continues to stay above 3 – this week at 3.31. He seems to have pretty good energy. At Christmas everyone commented on how well he looked and how high his spirits were.
Hope everyone had a great holiday season and let’s hope 2008 brings great news for dad!
Sorry this has taken so long. It’s been pretty busy this holiday season. The good news is that dad is feeling good these days. We just went to Carol’s annual holiday party in Mt. Airy and dad seemed very upbeat and positive about the way the treatment is going.
He had blood work done on 12/11 and the great news is that the level of abnormal protein (IGA) was down to 1705 from 2776 – more proof that the Revlimid is working. Unfortunately it may be working too well – because his white blood cell count is suffering as well – down to 2.4 from 2.8. Dr. Dushkin was concerned and considered reducing his dose of Revlimid or taking him off it for a while.
After his monthly off-week (not taking the Revlimid) his blood results came back on 12/18 – and more good news. The WBC was up to 3.8 – so a reduction in dose of Revlimid was not necessary. While dad was at the appointment he also got an Aranesp shot to stimulate his red blood cell production. Hopefully with each passing test we’ll get dad closer to his stem cell transplant – which will require all the support we can give. It’s going to be a long road.
All in all I can say dad seems to be in very good spirits and I haven’t heard him complain once. When things are going well it’s easy to forget he even has this disease, so please try and keep him in your thoughts this holiday season. Go dad!