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.......

Released but not relieved

They let me out of the hospital on Sunday, mostly because I started telling all the nurses I was going home, there was only one that challenged me with "only if the doctor says so". I had had enough, 5 nights, I was hungry and tired and just wanted to get home. My throat had recovered and I was no longer coughing up blood but the diarrhea persisted. No fever and my counts were on the rise. The doctor said I was borderline on platelets but since I had an appointment at the day hospital the next day he would let me go, like I planned. It was such a great feeling getting out and into to the fresh air. So today I returned to the day hospital and all was good except for the platelets, so they infused a bag of platelets, takes about an hour and a half to get the iv that looks like brown sugar and I was on my way. I did get a few nasty bruises over the past couple days and this is what happens when you don't have enough brown sugar! So, all is good, only one hurling episode today but the imodium ad is not working and the head is quite sore but it's good to be home and I actually have tomorrow off from the infusion lab as long as I don't get a fever I am good. So perhaps I can get the camera out for a good head shot and try on my new wig my good friend got for me!!!

Time for a hat!!!

Well, it's Saturday and I am still here at Hershey Med, maybe getting out tomorrow but not 100 percent sure, will see what the night brings. It's been a rough couple of days with little sleep. The throat issue seems to have resolved itself, I can now drink and have managed to eat some ice cream and jello without hurling. They are still giving me my meds via IV so I know I cannot go home until I am able to take them orally, think I will ask for the next round straight up. I also woke up about 5:30am with a really bad case of diarrhea, to replace the throat issue. They seem to think the chemo is just causing a stink the whole way thru my body so hopefully it ends with this. Stomach cramps have been pretty bad and I have got to change my outfit at least 5 or 6 times today! And then there's the hair, the moment I have been waiting for, the hair is coming out like crazy. I left quite a bit of it in the shower today but still sporting a bunch, I think I will sit here for the next hour or so and just run my fingerstru it to get it over with....it's everywhere.....pics next week. Well, it's a beautiful day out and I hope you all enjoy it, by the time I get out there I will definitely need a hat!!!!

Chemo Effects

I would say today has been the worse day so far, and it's a day that has not ended yet!  We were waiting most of the day for the pharmacy to produce Majic Mouthwash, it was going to be used to numb my throat so I could maybe swallow something.  I have had a burning sensation in my throat and esophagus, like really bad heartburn just higher.  Then I  began throwing up blood.  The first I noticed it, the nurse thought it was my black cherry soda I had just taken a sip of but I knew I had barely had enough in my mouth to cover my tounge but there was other liquids mixed in  so it was pretty faint looking for blood.  Later I was  asked to try and take one of my meds orally, all the others had been switched to IV except one ??? and I got about 1/4 of the tube in me, swallowed, then brought up some pretty red stuff. (not to be mistaken for Stewarts Black Cherry)  So the doc said I have mucositis from the chemo and they would need to give me some blood platelets which would help, but it heals by itself, like the infamous mouth sores.  So now it's 2am and I am getting the 2nd and last bag of platelets, all of my meds, some vitamin K and I think if I hit my pain med bottom on my iv I might get to sleep soon. Thankful that the fever has bot come back!!!!