Before Day -1
I introduced myself to this fine community yesterday ["Hello and thanks!", May 3, 2015]. Today I was admitted to Jefferson Hospital in Philadelphia for an autologous stem cell transplant (ASCT) after successfully completing 3 cycles of Cytoxan (cyclophosphamide), Velcade and dex, with a monthly infusion of Zometa to bring my multiple myeloma into the right state for a stem cell transplant. My goal is to present my experiences to readers and answer any questions I can regarding how the transplant process was for me (as I have learned in multiple myeloma, everyone is different).
I decided to undergo the stem cell transplant after a lot of reading (including the many fine posts here on The Beacon), research and discussions with my doctors with the goal of seeking the deepest, longest remission that I believed was possible for my circumstances. After the three cycles of my chemo concluded, both the stem cell transplant doctor at Jefferson and my hematologist felt that my optimal time for transplant was now.
I contacted my health insurance company, and was put in the approval process. This was a bit hairy for me, as I am one of those types of people that have to have assurances that all the ducks are in a row. My insurance case manager transferred me to a stem cell transplant case manager. This really started the insurance approvals process going. (That was a big relief, especially after I found out how much each Mozobil shot cost.) There were many phone calls back and forth, but persistence paid off.
The Jefferson stem cell transplant scheduler set up the pre-tests for me, and the stem cell doctor’s nurse practitioner set up the stem cell harvesting process for me. During this time, I had more bloodwork done than ever before. (I gave the technician at the lab a nickname of the “blood whisperer.”) I had an apheresis catheter installed in my neck (literally a pain in the neck) for my harvest. It was a bit uncomfortable with the weight of the dangly lumens, but tolerable for the period I needed it. I also received a shot of Neulasta on that Friday. Thanks to Beacon postings, I knew I would be taking Claritin and Tylenol for the bone pain. Over the weekend, I did experience more aches than usual, but, with the help of my trusty heating pad, and a few well-placed naps, I made out okay.
On Monday, I had to go back to Jefferson for my first Mozobil shot. Tuesday, I reported to the American Red Cross Blood center in Philadelphia for the harvest. Again, due to tips here at Beacon, I knew to be prepared to be chilled … so I wore a nice hoodie and had warmed blankets to get me through. I was fortunate enough to harvest enough stem cells for 4-5 transplants, but of course, I did have to have one more Mozobil shot before I found out.
Towards the end of the harvest, I started to feel a bit “tingly”, which I knew was a possibility. The wonderful nurse who was caring for me gave me some “Tums”, which in good turn took care of the tingly feeling. I felt it on top of my head! On Wednesday, I was supposed to have my apheresis catheter removed, but due to low platelets, I had to wait until Thursday. Thursday, was my pulmonary test, then the removal of the catheter.
Out of all the tests that I underwent to determine my body’s health for transplant, the most difficult for me was the pulmonary test. It was explained to me later that, due to the large amount of radiation in the area of my back proximate to my lungs, I may have decreased capacity (but not enough to hurt my opportunity for transplant). The person who coached me through the pulmonary test was exuberant, kind, cajoling and encouraging. All of her attitude made it possible for me to achieve my results.
I met with a colleague of my stem cell transplant doctor to add a second set of eyes on all my tests, and to discuss any questions that I may have regarding the process. The next day, I met with my stem cell transplant doctor to go over the tests, talk process and sign consents. At that time, I received my firm date for transplant admission for May 4, 2015. All systems go! I just re-confirmed all my approvals with my case manager at my health insurance company, and packed my bags (again, with tips from the fine folks who have posted before me).
So, this morning, my ASCT process began for real.
Denise
Forums
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computerteacher - Name: Computer Teacher
- Who do you know with myeloma?: self
- When were you/they diagnosed?: November/December 2014
- Age at diagnosis: 58
Re: My autologous stem cell transplant at Jefferson
Good luck Denise. My daughter had her SCT at Jefferson. The doctors and nurses were wonderful. She was in the hospital for 17 days.
I must say again – the nurses were great. Remember to suck on ice the day they give you melphalan. After a few days, you probably won't feel like eating, but the area right there has some good food. My daughter didn't want to eat and existed on mashed potatoes from the WaWa on Walnut Street.
Once again, good luck and hope all goes well.
I must say again – the nurses were great. Remember to suck on ice the day they give you melphalan. After a few days, you probably won't feel like eating, but the area right there has some good food. My daughter didn't want to eat and existed on mashed potatoes from the WaWa on Walnut Street.
Once again, good luck and hope all goes well.
Re: My autologous stem cell transplant at Jefferson
Hi Terrij!
Thank you so much for your good wishes and tips .... I chewed on so much ice before, during, and after the melphalan that my tongue was numb <smiles> And when I spoke, it felt like I was falling all over it! And the infusion of melphalan was really quick ... but that was a good thing, because ice is just frozen water, and, of course, what goes in, must come out (in those little hats in the toilet!). So, as soon as I got the ok, I made a bee-line (as best I could, dragging the blue donut pole to the bathroom door too!) to the potty.
I hope all is well with your daughter, and thank you for caring!
Denise
Thank you so much for your good wishes and tips .... I chewed on so much ice before, during, and after the melphalan that my tongue was numb <smiles> And when I spoke, it felt like I was falling all over it! And the infusion of melphalan was really quick ... but that was a good thing, because ice is just frozen water, and, of course, what goes in, must come out (in those little hats in the toilet!). So, as soon as I got the ok, I made a bee-line (as best I could, dragging the blue donut pole to the bathroom door too!) to the potty.
I hope all is well with your daughter, and thank you for caring!
Denise
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computerteacher - Name: Computer Teacher
- Who do you know with myeloma?: self
- When were you/they diagnosed?: November/December 2014
- Age at diagnosis: 58
Re: My autologous stem cell transplant at Jefferson
Thank you for sharing your journey through the SCT. I am currently in the process of scheduling an SCT for the end of July at Stanford. Because of my chromosome abnormalities, it is being scheduled for sooner than later. Thanks for your tip about the insurance company. I too like to get all my ducks in a row and will be contacting my insurance company, as my procedure will be out of my network service area.
Best of luck to you in your recovery, stay strong!
Rhonda
Best of luck to you in your recovery, stay strong!
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: My autologous stem cell transplant at Jefferson
Hi Rhonda!
Fortunately for me, the two hospitals (out of state, across the bridge) who perform this treatment (Jefferson and the University of Pennsylvania) were in my network for this treatment. But I learned some hard lessons when I was admitted to another hospital last year for an emergency needle biopsy of the mass on my spine that had tripled in size from August to November, and began receiving radiation treatments as an inpatient and then, after that, as an outpatient. What a mess getting that billing / insurance payment resolved (but with MANY phone calls and persistence, the dots were finally connected and all bills resolved; however; it took about 4 months).
I wrote down EVERYTHING, including date of phone call, representative name, discussion notes, case numbers ... and unabashedly referred back to these notes, naming names, especially if information was conflicting.
My current case manager was not officially assigned to me until I "officially" notified the previous case manager of my status in treatment. Horse hockey pucks – but, I did it. Then there was a bit of a rush, which I pressed on, because of the quick opportunity for a bed in the stem cell transplant unit. I was not giving up my spot for this reason.
Thank you for your well wishes, and I am sending you back the same along with some prayers for persistence, patience, and empowerment.
Denise
Fortunately for me, the two hospitals (out of state, across the bridge) who perform this treatment (Jefferson and the University of Pennsylvania) were in my network for this treatment. But I learned some hard lessons when I was admitted to another hospital last year for an emergency needle biopsy of the mass on my spine that had tripled in size from August to November, and began receiving radiation treatments as an inpatient and then, after that, as an outpatient. What a mess getting that billing / insurance payment resolved (but with MANY phone calls and persistence, the dots were finally connected and all bills resolved; however; it took about 4 months).
I wrote down EVERYTHING, including date of phone call, representative name, discussion notes, case numbers ... and unabashedly referred back to these notes, naming names, especially if information was conflicting.
My current case manager was not officially assigned to me until I "officially" notified the previous case manager of my status in treatment. Horse hockey pucks – but, I did it. Then there was a bit of a rush, which I pressed on, because of the quick opportunity for a bed in the stem cell transplant unit. I was not giving up my spot for this reason.
Thank you for your well wishes, and I am sending you back the same along with some prayers for persistence, patience, and empowerment.
Denise
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computerteacher - Name: Computer Teacher
- Who do you know with myeloma?: self
- When were you/they diagnosed?: November/December 2014
- Age at diagnosis: 58
Re: My autologous stem cell transplant at Jefferson
Day -1
Monday was my official Day-1, starting out in Interventional Radiology, for my PICC line, and ending with my dose of melphalan. I had never had a PICC line installed, which I admitted to all the team who took care of me. They spent extra time talking with me, sharing some distracting newsy chit-chat, all the while reducing my stress for the unknown.
I am amazed at the teamwork that happens in good health care, and when it works, it is to the advantage of the patient. I have an excellent team. The most discomfort that I felt during the PICC line process was the lidocaine – but, having the apheresis catheter installed before, I knew what to expect. I hardly felt anything, and with the comforting presence of the team, I had no stress.
My husband and I walked down to the Atrium, where he grabbed some breakfast, and I had a nice cup of WAWA coffee, then he went back to the car for my 2 suitcases and bag of pillow. (Again, thanks to the Beacon posts!)
I have a private room with a view of some interesting buildings, but I can see the sky and sun. I brought a poster and some removable “klingies” to brighten my room. Then the parade of my team began in earnest. Thank heavens I have learned in teaching to repeat names early and often to help me remember, as everyone has their masks on and can look alike. I liked the fact that, from nurses to “fellows”, and more, they had gone over my health record and could recite a brief synopsis of my confusing path to transplant. And conversed with me about it.
After a nice lite lunch of chicken soup and crackers and Kozy Shack, I settled in for the wait for my melphalan, which started at 2:50 p.m. and ended at 3:10 p.m.. That was a quick treatment, and thanks to pre-meds for nausea, etc., I did not suffer any side effects of the infusion, and was able to have a nice dinner (more soup and crackers and a salad) and settle in for the numerous rounds of vitals, well-checks, labs, etc ... and, of course, the million trips to the bathroom to get rid of all the fluids.
My stem cell doctor had given me the heads up on the “expected” start of side effects, so I am not doing any yippee-skippee dance right now. Just hoping that my expected side effects will be lessened by the expert care I am receiving.
Day Zero has arrived with sunshine and a bit of apprehension, but also hope.
Denise
Monday was my official Day-1, starting out in Interventional Radiology, for my PICC line, and ending with my dose of melphalan. I had never had a PICC line installed, which I admitted to all the team who took care of me. They spent extra time talking with me, sharing some distracting newsy chit-chat, all the while reducing my stress for the unknown.
I am amazed at the teamwork that happens in good health care, and when it works, it is to the advantage of the patient. I have an excellent team. The most discomfort that I felt during the PICC line process was the lidocaine – but, having the apheresis catheter installed before, I knew what to expect. I hardly felt anything, and with the comforting presence of the team, I had no stress.
My husband and I walked down to the Atrium, where he grabbed some breakfast, and I had a nice cup of WAWA coffee, then he went back to the car for my 2 suitcases and bag of pillow. (Again, thanks to the Beacon posts!)
I have a private room with a view of some interesting buildings, but I can see the sky and sun. I brought a poster and some removable “klingies” to brighten my room. Then the parade of my team began in earnest. Thank heavens I have learned in teaching to repeat names early and often to help me remember, as everyone has their masks on and can look alike. I liked the fact that, from nurses to “fellows”, and more, they had gone over my health record and could recite a brief synopsis of my confusing path to transplant. And conversed with me about it.
After a nice lite lunch of chicken soup and crackers and Kozy Shack, I settled in for the wait for my melphalan, which started at 2:50 p.m. and ended at 3:10 p.m.. That was a quick treatment, and thanks to pre-meds for nausea, etc., I did not suffer any side effects of the infusion, and was able to have a nice dinner (more soup and crackers and a salad) and settle in for the numerous rounds of vitals, well-checks, labs, etc ... and, of course, the million trips to the bathroom to get rid of all the fluids.
My stem cell doctor had given me the heads up on the “expected” start of side effects, so I am not doing any yippee-skippee dance right now. Just hoping that my expected side effects will be lessened by the expert care I am receiving.
Day Zero has arrived with sunshine and a bit of apprehension, but also hope.
Denise
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computerteacher - Name: Computer Teacher
- Who do you know with myeloma?: self
- When were you/they diagnosed?: November/December 2014
- Age at diagnosis: 58
Re: My autologous stem cell transplant at Jefferson
Hope is contagious Denise. We will all be doing happy dances with you soon enough.
Chris
Chris
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cneri
Re: My autologous stem cell transplant at Jefferson
Hi Computer Teacher!
You never cease to amaze me! You are always using your knowledge, expertise, and experience to teach and encourage others. I know that you will teach and share all that you can with those on the Myeloma Beacon, because that is what you always do for us at school. You share your gifts wherever you go. I am praying and wishing you all of the best on this next part of your journey.
Proud to be your colleague!
Sue
You never cease to amaze me! You are always using your knowledge, expertise, and experience to teach and encourage others. I know that you will teach and share all that you can with those on the Myeloma Beacon, because that is what you always do for us at school. You share your gifts wherever you go. I am praying and wishing you all of the best on this next part of your journey.
Proud to be your colleague!
Sue
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S. LaSanta
Re: My autologous stem cell transplant at Jefferson
Hey Denise,
You always give the best instructions, so I knew I would have no trouble finding you!
I'm sorry that you have to go through this, my friend, but I admire you for documenting your journey for others to benefit. It is so you!
Thinking about you, and keeping you in my prayers and thoughts.
XO
Donna
You always give the best instructions, so I knew I would have no trouble finding you!
I'm sorry that you have to go through this, my friend, but I admire you for documenting your journey for others to benefit. It is so you!
Thinking about you, and keeping you in my prayers and thoughts.
XO
Donna
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dhegge
Re: My autologous stem cell transplant at Jefferson
Denise,
Stay positive and laugh! Just remember that every day and each treatment brings you closer to remission or a cure. You never know how strong you are until something like this tests your strength. Your journal will help other patients as well as those of us cheering you on from the sidelines.
Hugs!
Love, Rose
Stay positive and laugh! Just remember that every day and each treatment brings you closer to remission or a cure. You never know how strong you are until something like this tests your strength. Your journal will help other patients as well as those of us cheering you on from the sidelines.
Hugs!
Love, Rose
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