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!!!!  
      

Fever.....

Tuesday,not such a good day. We make the trip over to Hershey and had an 8am Appt today. I let the doctor know that taking the medication is almost impossible. It makes me gag and I end up throwing everything up and also again about this burning in my throat. Alot of patients get mouth sores or ulcers, I have been gargling to avoid this but I think they have invaded my throat! After returning home and hurling a few times things got worse. I have to check my temperature often and cannot go over 100.4, and of course I went there. So, we called the doctor and with in an hour I was on my way to Hershey again, this time for admission. It's actually Wednesday now, mid afternoon and have to go, nurse here. Will update later hopefully

Day +6 After Transplant

Well, just waiting for the next step after the cell count levels out, time to grow new and cancer free cells. Everything has been pretty good, a bit of nauseau but got that under control with the drugs. Getting what seems to be a slight sore throat. It's Monday and they move forward bh injecting m e again with nuepegen, the growth shot. New bandage for my port, some shots blood, blood work, and still out if the day hospital in an hour!

Day 2 - At Home

This morning was a bit rough, waking up to diarrhea then trying to eat just something only to start hurling it all up, sorry.....Took some of the prochlorperazine which really seemed to help so hoping we can keep some of these symptoms under control. I think alot of it might be the medication, it's smells bad and it's not easy taking the meds with an upset stomach. I have to go back into the lab everyday for blood work and to make sure there is no sign of infection as this could be deadly for me with no immune system. Apparently my cell count is just on the downfall, so I won't feel the full effect for a few more days, they said usually day 6 or so is the bottom. Once I get to that stage they will give me those nupegen shots again to boost cell growth. These new cells are my goal. So one more day down few weeks to go, but just realized that I will be sporting my port over the holiday again this year and that sucks.......

Day One -Transplanting Cells

Getting ready for the first set of cells, they break it up into two sessions. They first hooked me up to monitor blood pressure and heart functions during the procedure.  Along comes the man from the blood bank I saw last week pushing a little cart with my 7 bags of cells,  frozen in a bucket of liquid nitrogen and a warming machine.  He has to thaw out the bags and insert them into a syringe that must be injected within 10 minutes or the cells are no longer good.  They access my port and begin the injection and within seconds my first reaction.  A common reaction from others was that of the taste of creamed corn or garlic, some others also said they has the taste of crab dip or seafood. Also, this smell can be noticed outside of the room by others and will come off of me for the next few days. They have you suck on mints or hard candy to avoid this while they inject the cells. I did not get any of those tastes just a burning, itchy sensation in my throat that was a bit overwhelming and ceased once the injection was completed.  After the second push they gave me benadryl as this scratchy sensation was getting a bit worse and it seemed to be affecting my ability to breathe normal.  The benadryl seemed to help, but with each syringe of cells the sensation came back about  halfway thru the push, but left just as soon as the  injection was finished.  It was all over within about an hour, feeling ok now but having a real hard time concentrating on this typing so I will end for now.  I have 9 more bags to go which will be around 2:30 and then hopefully
nap time as I didn't get much sleep last night.  I will let you know if I am veggie or
seafood as soon as someone comes back in the room, they all left so not sure what I am emitting right now!  

Discharge Day

Well they let me go home this morning, actually got out of the hospital around 9:30 today. Felt pretty good this morning when I woke up, tried to eat some of that good old hospital food but only managed to get about 4 bites in, that was good enough. They sent me packing with my 5 new prescriptions, anti viral, anti bacterial, nausea ...not sure what else. Have to take temperature four times a day and need to call into the hospital if I get over 100.4 or if I start to get the mouth sores, I think that might be grounds for another night at the spa as I call it. I am starting to feel the effects of the chemo I think, mostly just my stomach, like a rolling feeling that comes and goes. I think it might get worse before it gets better so I will close now, I want to get a few more bites in me as I don't think I will be eating anything for a few days, or very little. They want someone with me around the clock, I really must apologize to those who have this duty because it's probably not going to be fun...

Transplant Complete

Well, the verdict is back, it's creme corn from outside my door. It's very strange as I do not taste or smell anything different and they are all getting this with masks on! So the last 9 bags of cells have been injected and all went well, it was actually a bit easier this time, not so much of the itchiness in the throat this time. The doctor was in and said everything went well and they will check out the labs in the morning and I should be able to go home tomorrow, amazing! He said if my temperature reaches over 100.4, or mouth sores develop I need to call in immediately and would probably need to come back. Very strange that my current temp is only at 95 .....So the biggest issue now is not to get an infection of any kind and stay as germ free as possible, and hopefully get some rest. Never got that nap mostly because of the frequent bathroom visits as they are pumping me full of liquid, but other than that no other side effects as of yet from the chemo but I think it may come soon. Hopefully I will be blogging from my couch at home tomorrow afternoon.

Day ZERO

Still Awaiting the effects of the melphalan (chemo) yesterday, just a bit of sleeplessness and sweating but that has been the norm for me over the past year or so with the other drugs. Today will be the actual transplant of my own cells back into my body, they call it Day 0. They should be in to do some blood work shortly to make sure the chemo did it's job and I am pretty much bone marrow free, cell less. Looks like they have 23 bags of my blood frozen and I will get 9 bags today, a total of 4.9 million cells overall but approximatly 2 million needed for todays procedure. The rest will be kept here at Hershey in case I need another transplant.
They advised me to make sure any person entering my room today is wearing a mask, it's my well being at stake and I should not be around any germs today as I wont be able to fight any thing off for a few weeks. Another thought, as a friend also mentioned to me who knew someone who had this procedure is that you have to get all of your immunizations again as they have all now been erased. My doctor did confirm that yesterday buy that is about 6 weeks down the road. So please let me know when any of little ones I am around have been exposed to the chickenpox!!

Chemo Day

Got to Hershey Medical Center around 11am today and right to what they call the infusion room for lab work. Just a couple of tubes of blood and met with the doctor for a quick consult to make sure I was feeling ok and healthy today. Got checked into the room and I must say , this is the cleanest hospital I have been in, it actually smells good. They started, off by cleaning the port ends and changing the dressing, an EKG, and 25mgs of dexamethasone. All the while I amstill in the clothes I wore in, no one size fits all hospital gown needed. Another chat with the floor doctor and he has placed the order for the chemo drug. They have to administer it within 30 minutes of mixing it and he is here with it right now. They are giving me 340 ml of melphalan as I type over a period of 15 minutes. They make you chew on ice as they administer the drug to restrict the blood flow to your mouth to try and prevent the mouth sores that often happen. So need to go so I can eat my ice, I will be back in a few hours...

Awaiting the count

I have completed the 2nd harvesting of my cells. It was another 4 hours on the machine today. Just a bad headache and some diarrhea but otherwise painless. I am hoping they got enough cells this time, I am assuming they will call to confirm that later today but not sure. Otherwise it's a little break until next monday, that is when the real fun will start. They said I should come into the med center early to do lab work and then hang out until they have a bed ready for my 3 day stay. It will also be chemo day. Although I have been on the Revlimid and Velcade for a year this will be a very invasive treatment that will take away all my bone marrow as well as all my hair and make me quite sick they say. So till then, it's rest and as little germs as possible, need to stay well.

Second Harvest

Well, must have been the moon, wasn't quite right. Had to come back to the medical center last night around 8:00 pm to get three more shots. After they counted my cells they only had 2.4 million cells. This is enough for the transplant but the doctor wanted enough for a tandem transplant that may be needed 6 months down the road. The cells will be frozen until they are needed at that time. So,we are back at the blood bank this morning for another cell extraction and hopefully another 2 million plus cells.

HARVEST DAY

Currently at the blood bank at Hershey Medical Center hooked up to machine that is extracting my blood. No issues from yesterdays shots other than a really bad headache last night. So they will keep me on this machine today anywhere from 4 to 6 hours depending on how my cell count is, not sure when they will know that. They monitor your calcium and potassium as this process depletes both so you receive it back via the iv. Apparently after the collection it takes 2-3 hours for them to extract the stem cells from the white blood cells they just collected. They won't know until that time if they have enough cells or if I will need to repeat the process tomorrow. All is good for now, feel normal so I will update in a few hours or if anything changes.

9-18 and 9/19 2010

Yesterday was two shots of the Neupogen, one shot to each arm.  They said it was a pretty high dose, thus two separate shots to break it up.  They changed the dressing on where the port was placed, took some blood for CBC check and off I went.  Returning today the blood work shows my growth from 6.4 to 14.3, that in thousands she said, but they need 2 million cells by Tuesday.  Two more shots, more blood work and that was that.  Got some pretty bad headaches today.  The nurse said probably as your sinus cavity is usually empty and its now filling up with cells.  Some people have told her they have taken sinus meds to relieve this pressure.  Apparently tomorrow I will receive two more Nuepogen shots and have to wait until after 5 pm for the Mozobil, which apparently will shot those cells into high grow as they will do the collection on Tuesday morning and don't allow the shots until after 5 the day before.  So, tomorrow evening could be interesting.  Will supply pictures if I happen to have cells oozing out from anywhere!  Otherwise, all is well so far so good.

9/17/2010 Tunneled Central Catheter

Well, the port has been placed, same spot as last time which is nice, no new scar! The placement was not too bad, arriving at 10am and done at 2:30. They basically just put you in a sleep or state of amnesia, no pain till a few hours later around he site. I am now waiting

At the infusion lab to get my first growth shot. Not sure what this will be like but I don't think mrs too bad, will let you all know later.

Pre Testing Autologous Stem Cell Transplant

I had to undergo some testing to determine if I was eligible for the transplant.  An Echocardiogram to check the heart, a pulmonary test for the lungs and a Pet Scan and lots of blood work.  All were ok and we are moving forward.  I am an awaiting a schedule from the Dr. as to the start of the process which should begin around the week of the 20th of September 2010.  First I will receive a drug called granulocyte colony-stimulating fact (G-CSF) FOR 3-4 days to increase my white blood cells.  These cells contain the cells used in marrow transplantation called hematopoetic cells. These will be the cells collected on the 4th day.  I will have to have a port put in and they will extract the cells via a machine, similar to a kidney dialysis unit if you have ever been on that - it will take 4-5 hours.  I will be admitted to the hospital for 2 nights where they will give chemo to wipe out all bone marrow, the next day the cells will be transplanted back into me and I should be able to go home for the two week growth period.  You actually have a choice of staying in the hospital (where there are so many unknown germs) or going home and just going in each day to have blood work.  After my month last October in the ICU I am choosing to go home. I will update once the procedure is underway. 

The Rash

As an after thought, I wanted to explain the picture.  I got hives in 2008 and it turned into this rash.  It was all over my body but predominately on my legs.  None of the doctors I went to had seen this before.  This was the start of all of my symptoms.  They talked about doing a biopsy on my skin but never did, they should have.  My hematologist now asked me that question and said that was the first thing that should have been done.  He said he only say this once before and it is not typical with Multiple Myeloma but you never know.  He is testing me for something else now as well as he has seen this one other time in his 20 years.

First Step - Dr Talamo

After contrancting a very strange rash in 08, becoming septic, twisting an ankle and told I had lupus I started on various drugs, Cellcept, Predisone and a few others to control potasium levels.  Other symtoms arose like fatigue, pain in hips, back and shortness of breath.  Rumatologist did extesive blood work to find everything was crazy inside. White, reds , protien and calcium levels , I was anemic and needed blood and he told me to check in to the nearest hospital immediately -which was the next day.  This was August 09 and was told I had Multiple Myeloma - at least I knew.  Transferring to an oncologist we began a new series of treatment and discussed the Stem Cell transplant within the next 6 months.  But after the drugs: Revlimid, Dexamethasone, Prednisone and Zometa and some other various drugs to control calcium and potassium levels I got an infection. 105 fever in a matter of minutes and ended up with pneumonia and became septic and had renal failure and was put on a respirator and into a coma for 3 weeks.  Waking up was not good, could not move arms and legs and had no kidney function. I have come back from that in the beginning of this year .  I have been on Revlimid and Velcade for 9 months as well as Aredia vs Zometa (not sure why the change) and just started back on Des 6 weeks ago.  I have spinal stenosis in my neck as well. Lots of back pain, neck pain and arthritis everywhere.  I just met with the hematologist at Hershey and will being my testing for the stem cell transplant.  He feels ok that we can harvest my cells, I hope as I read about being on Rev too long so we shall see.  I hope to blog this my the end of September if all the testing goes well so others can know what its all about as I struggle to find information regarding this.