Back at the ER and Admitted

Well the bleeding did not subside and the breathing has not improved so what else to do on a Sunday night than check into the Er. This time we are doing a CT scan since nothing presented on the xray Thursday and now it's very clear ....pneumonia in both lungs. They seem to think that the bleeding is being caused by my coumadin level being too high. So looks like another sleepover at the spa and after blowing out several veins and getting me to my suite the iv and steroids begin. No sleep for a few days. The heart doctors have said there is a bit of enlargement on my right side but nothing to worry about, and I must agree as there IS the myeloma and lung issues and that's about all I can handle right now. So finally after consult with my local oncologist today we are getting a Pulmonary Disease group involved and I just met with them and we have a plan for tomorrow, a broncostopy as long as my coumadin levels are managable. This will show them whats in my lungs, had one about 26 years ago when I coughed up blood for a few weeks, have a bit of history with bronchitis and asthma. My oncologist was just in and my platelets have dropped to a low 27, m protein 3.9 and the IGG is over 5000 which is the worst I have been yet. So as I type the pulmonary group just walked in and advised we will and get this done tomorrow after they give me some platelets and assuming my coumadin levels are at 2.....let's hope as I need an answer so I can resume treatment. Keep you posted.

Ineligible for Trial

Well the breathing problems returned after only two days and continue now. I completed a chest xray and pulmonary function test requested by Dr Weiss in PHL. He called me on the 30th and said the test results did not look good and he would not feel comfortable putting me in the trial so there was no need to keep my appointment for the 31st. He suggested that I see a pulminologist and he would get with my local oncologist to figure out some form of treatment for now. Dr. Andrews got me an appointment but not until June 11th which seems like a long time when you can't breathe! So I decided to to the ER on Thursday and see if I could get any relief there. They did another chest xray - clear and then decided to look at my heart. EKG was good and they admitted me so they could do a stress test he following day. I have had a real bad cough as well so at the end of the day the doctor informs me that my heart and lungs are good. He did ask if I was passing any phlegm and what color it was, it was clear. So he discharged me and told me to take mucinex that it sounded like bronchitis maybe......so soon as I get home Friday about 5 I start coughing up bloody phlegm, deep red then a real dark brown color back to the bright red. I am thinking its from the stress test and the stuff they shot into me but who knows. Mucinex is helping the cough, breathing is a tad bit better...not much. I called the on call number for my oncologist today to inform them of the blood and got nothing, she said to call later if it persists and I could be seen tomorrow if need be. Feeling very week and just want to sleep. The hospital told me my platelets were very low so maybe tomorrow I will hit the wall and they will give me blood or something......who knows. For now, guess I will take a big nap...

Relapsing.....

Well it's only two months since my last blog (feels like confession) but so much has happened with this nasty cancer. As my numbers increase my regular oncologist pretty much said to wait and see what Dr. Talamo at Hershey wants to do. So my followup May 7th at Hershey seemed hopeful only to have him say I need to go get in a trail or try to get the new drug that is not out yet, carfilzomid....and referring me to another doctor in Philadelphia, Dr. Stadtmaur. He was booked for some time time so I took an appointment the following week with his counter part Dr. Weiss at University of Pennsylvania. So Dr. Weiss spoke with us but did not have all the lab work and files to determine how much the myeloma has progressed over the last month. I will have the lab work Monday from May 7th but the new tests were done in PHL and we will return on May 31 and get those results. He gave me information regarding some trails I could sign up for and we decided that I would discontinue all medication I was currently on to give my system a break. I have been experiencing difficulty breathing for two months and after ct scans showing clots around both lungs the answer was more drugs warfarin which I should have been on since the transplant....??? Any way my last velcade injection was may 7th after the 7 inoculations to get me up to date and I missed my revlimid the day before my appointment in Hershey so the last revlimid was May 5th. Its amazing, after not being able to breathe right for two months I finally started to feel better just 2 days ago and passed a clot or something that looks like an alien thru my nose (I will take it to the doctor Monday). So back to the trails, one drug Acy-125 has only been given to dogs, not doing that one, and the carfilzomid which is the new velcade, the one they want me on, I think I might have to wait until the FDA approves as I don't know if I can go thru the trail at this point. Reading the paperwork they have supplied I could have every symptom I have just have over the past year and don't know if I have the will power for much more. I may just opt to be drug free for a few months depending on the recent lab work and take my chances and just take a break. Not sure if there are any other options right now but we will discuss it further on the 31st before I make a final decision. So I will update again after the next train ride to PHL and until then focus on the new house......hopefully we are breaking ground next Tuesday and it will be done in two months.....now that would be progress!!!!

Transplant Unsuccessful

Well its been some time since my last update but alot has happened.  Apparently in July 2011 my protien levels and light chains began to increase but the doctor didnt really tell me until September, the myeloma was not gone, the stem cell transplant did not work.  Another transplant at this time would not do anything since the first one was not a sucess.  Another option would be a donor bone marrow transplant which would not be covered by Medicare so at this point I remain on weekly Velcade injections - a change from the velcade IV they were giving me and the Revlimid, chemo in a 21 day pill form which costs $8000. a month and weekly decadron 10 every friday which is like a steroid.  Apparently my cancer is becoming immune to these drugs so we are just waiting for some new drugs to hit the market, there are some out there which might hit the shelves this year - hopefully.  So I go on trying to fight off infections all the time and doing the drug regiment and looking for any other options that may be out there.  The fight is still on .....

Maintenance

Its been awhile since I have posted, so I thought I would update some information today after receiving my weekly Velcade treatment and speaking with a few other myeloma patients.  It's now April and I have been taking the Revlimid 15mg since the transplant and doing the velcade IV treatment weekly since October.  My counts are looking good according to the Dr. and I am feeling pretty good  most days.  I did have an issue with pain in the lower back, spinal stenosis caused by the myeloma and have tried many different pain medications to quite it to no avail.  Finally, two weeks ago I was given a patch, Fentanyl which lasts 72 hours and it has completly taken away the back pain, no negative side effects so far!  I have to go back on May 11 to the Hershey Med Center to get all of my immunations that were wiped out from the transplant so that is the next big event.  I am wondering if they give them to you all at once ?????  Will let you know.

Good Results

I did the bone marrow biopsy last week, this is almost the worst part of the whole procedure! They still have not found a way to do this that is easy.  They do numb you with medicine almost like at the dentist and then insert a needle into your back/spine down into the bone to obtain a sample of bone marrow.  The procedure only takes about 3-4 minutes but it seems like an hour as you can feel quite a bit of what they are doing.  After a week I returned to the doctor for results which was yesterday and they said they found NO cancer cells in my marrow, so the procedure was a success!  Options now are to have another transplant within 6 months or to go onto the maintenance program.  I am opting not to have another transplant but to go on the maintenance drugs at this point.  I just don't want to go thru all this again and the the percentages for this being the most effective are not that great so I will hope they find some new drugs in the future to keep this disease at bay.  Overall I am doing well, having some pain from the arthritis this disease has caused me but prednisone is keeping it at bay. I hope this has been helpful for anyone facing this procedure with or without Multiple Myeloma and is considering this procedure.  I look forward to some better days and spending time with my family and friends....

Break Time - Feeling Better

Well, my counts are recovering quite nicely.  Here I am in all my glory, not a bad head if I must say so .  And the wig thing, not so bad, its warm.  I only have to go for lab work every other day now and hopefully I will get the line removed next week!  Then the bone marrow biopsy on Nov 3rd will show if the transplant was successful or not.  So I will close until then, than you all for following my progress.  I will update with the final results when I have them, hoping its smooth sailing until then.......