09/22/10

Well good news Joe is still in remission, though he is still having some health issues he is still spilling a lot of protein through the kidneys which is causing him to have fatigue, nausea and some of his original symptoms. He is schedule to have surgery on his arm and hand on November 2nd but with his bleeding disorder they may have to put it off for a few weeks so they can get a plan together because Joe will need Fresh Frozen Blood Plasma (FFP) before the surgery to control the bleeding. Please continue to pray for Joe and all Amyloidosis patients. God Bless

August 17, 2010

8/17/10 Joe celebrated his 1 year stem cell birthday on August 31th 2010. We had a small family party the weekend before and then went to dinner with friends on the 13th. Joe still has many health issues but is doing pretty good for what he has gone through currently we are leaving for Boston on August 29th 2010 for his yearly check up to see if he is still in remission. He still goes to his doctors here in Syracuse once a month to be monitored. He is having neuropathy in his arm and hands could be from the amyloidosis or the chemotherapy, he had testing done and the ulnar nerve is damaged so he will see a surgeon when we get back from Boston to decide on what needs to be done next. Please pray for good results from Joe's testing and please pray for all Amyloidosis patients, just this past week we lost a fellow patient he was 44 years old and was misdiagnosed for 6 months he had a wife and three small children. I truly feel he would still be alive if the doctors were more aware of Amyloidosis and tested for it early on in his illness when he had multiple organs involved. Very sad please get the word out on Amyloidosis, God Bless you and we love you all.

04/21/10

04/21/10 Well Joe had his heart ablation done, he is doing pretty good but experiencing some pain in the groin area which is very bruised due to that is the area they went through to get to the heart. The doctor said he will still experience some afib for a few months before the ablation works ( if it works) sometimes they have to go in a second time to touch up some areas in the heart for it to work. He will stay on his heart meds for at least three months before they will take him off to see if the ablation was successful. He needs to take it easy for the next three weeks no lifting over 5lbs, no extra activity. Hopefully this will be the final procedure he will need done to get his strength back and his life back. He really wants to be able to start living his life again. Please continue to pray for Joe and all the Amyloidosis patients. Also if you get a chance please check out the website SecureHarbor.org Joe and I are so grateful for all the help and support they have given us during Joe's treatment. God Bless and we love you all.

03/06/10

03/06/10 Well we received good news from Boston, the band that they were seeing was kappa and Joe original disease was lambda there are two different types of light chains, kappa and lambda. Originally, his disease was lambda disease, which was originally confirmed on the bone marrow biopsy, immunofixation electrophoresis, and free light chains. When he returned for his 6 month follow up, his bone marrow biopsy and free light chains were normal. His immunofixation electrophoreses showed a band in the IgG and kappa lane, suggesting that he has kappa disease. However, they know that his disease is lambda and there was no evidence of lambda disease on is evaluation. Therefore, they are now saying he had a complete response at 6 months. They are uncertain of the significance of the IgG kappa. This is sometimes elevated if someone who had a recent infection (such as Zoster) or this may be related to the transplant itself. Obviously they will continue monitoring this band, but they do NOT think that this is the amyloid. We will return to Boston in August and have the evaluation repeated and hopefully Joe will still be in remission and will remain that way for a long time. He will continue to be tested once a year for the rest of his life. Thank you for all your prayers and please keep praying for Joe and all the amyloid patients God Bless and we love you all!

2/28/10

2/28/10 We are back from Boston and Joe's six month evaluation. Joe did not get the complete response this visit we were hoping for and he is not in remission yet but the doctors are optimistic that by our next visit in August he will have a complete response to treatment. He does not need any additional chemo right now, the test came back that there was no amyloid in the bone marrow or free light chains. Some of the other test still showed a band of amyloid which could be a surplus of amyloid his system is disposing of which means the stem cell transplant is still doing its job. There was a few other possibilities that the doctors explained to us one being a clone of the free light chains and the other being new amyloid but it is more likely the surplus of amyloid. We were told the stem cell transplant sometimes takes a year to get a response. We are happy with results so far, even though at first we were disappointed that Joe did not get a complete response. We need to be thankful that Joe did not need anymore chemotherapy as some patients do at this point of their treatment. Joe will need to get a ablation done to his heart to get it back into normal rhythm and hopefully this will help him feel better, he is always out of breath, dizzy and his blood pressure is low. While in Boston Joe came down with bronchitis, his doctor here put him on antibiotics and is watching him to make sure it does not develop into pneumonia. Joe will continue to see his hematologist here monthly to watch his blood levels. Joe's kidney failure from the amyloid is at 50% the nephrologist he sees in Boston said this is no different than someone with one kidney and Joe will just need to take very good care of his kidneys. Joe will need to see his nephrologist here every three months. We are both still processing all the information from this visit I will update you again in a few weeks when we get the hard copy of the report from Boston and to let you know how Joe is doing. God Bless and we love you.

Monday 2/08/10

2/08/10 Well two more weeks and we will be in Boston Joe and I are both very anxious. Joe will go through all the same test he went through for his evaluation including the bone marrow which he is dreading. We will be there for three days of testing come home on Thursday and wait for the phone call on Friday which will give us the news if he is in remission. We are hoping and praying for a complete response so Joe will not have to continue with any treatment. Joe will have to be tested again in August and than again every year after that. There is no cure for Amyloidosis so it can come back at anytime but hopefully not for many years. We both realize this is our life now and we are living each day to its fullest. We can't let the things we can't control run our lives. We have wonderful family and friends that love us and we love them, we have our faith and everything else will work its self out. Joe has been feeling pretty good these last couple of weeks, he looks good his hair has grown in darker. His blood work came back good this last time his triglycerides are down to 197. The shingles pain is just about gone. Well keep praying, God Bless all of you, we love you and I will let you know what the news is when we get it.

1/19/10

1/19/10 Well Joe has been doing pretty good for the last week his complications from the shingles have subsided, still having some nerve pain but nothing compared to when he first had the shingles. One more month and we go back to Boston for testing and to see if Joe is in remission we both are very nervous, but hopeful that we get good news. Please keep praying that Joe gets a complete response from his treatment. The doctors here are going to continue to monitor Joe's liver and spleen but dont feel it is anything we need to worry about. Blood pressure is still very low which is causing the dizziness. Hopefully Joe is turning the corner and on his way to feeling better. We love you all and God Bless.

1/03/10

1/03/10 Sorry if my last update was brief, some days are harder than others and I think it was tough with the holidays coming up an having Joe so sick. He has started feeling a little better the last couple of days which is good to see him actually up and having some good days again. So he has had some complications from the shingles, the shingles themselves have gotten better he only has a few left that need to heal the nerve pain is much less than it was. But where he had the shingles like I explained in one of my previous post was in the perineum region which on a male runs the distance between the anus and the base of the penis well the shingles follow a nerve path and effects parts of the body that the nerve path controls. Well it effected Joe's bladder and this caused urinary retention, so Joe was unable to urinate on his own and had to have a catheter inserted in order for him to urinate. He left the hospital with it still inserted we were hoping he would of been able to urinate on his own within a few days. We had to follow up with a urologist after a few days, well after removing the catheter (which they had me do six hours before the appointment) they tested his bladder and it still was not functioning. Well we left there with a big box of catheters and instructions on how to self cath. So this was on December 14th and Joe had not urinated on his own since the 9th. We have been doing the catheter since then 4 to 5 times a day until this weekend Joe has started to urinate partially on his own he still is not emptying all the way so we still have to use the catheter a couple times a day but we think hopefully in the next week it will come back totally they told us it could be 4 to 8 weeks. So this is where we are at with the shingles. Joe started having severe stomach pain the week before Christmas so they sent him on Christmas eve for a cat scan of his abdomen and pelvis area and what they found was that his spleen is enlarged, they also found that the lesions on his liver has have changed in density and size. Joe had the liver lesions before we left for Boston and they wanted to biopsy them but when we got to the hospital they were unable to do the biopsy due to his bleeding issues. So now he will have to have the biopsy done. Also with the enlarged spleen we are waiting to talk to the doctor on Wednesday to see what needs to be done with amyloidosis and factor X deficiency there is always a chance that spleen will need to be removed. So we wait to see what will be done with these two new issues in the mean time they increased his pain meds. Well like I said Joe has had three good days in a row so hopefully he is back on track to feeling better. Just want to remind everyone to keep praying that in February when we return to Boston Joe will be in remission and we get good news that he has had a complete response to his treatment. Please remember there is no cure for primary amyloidosis there is only remission and we can only hope and pray that Joe gets a complete response from the treatment. Also remember that amyloidosis is one of the most undiagnosed diseases and anyone can get it though it is rare and only eight people out of a million are diagnosed, that is about 2400 people each year in the United States they say another 4800 go undiagnosed and it is usually discovered during an autopsy. For more information on this disease please go to www.secureharbor.org and read what the symptoms are they also list other websites you can go to for more information. Well God Bless and we love you, Happy New year to you all!