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Re: Paul, diagnosed yesterday, about to start KRD
When I had to have IV sticks I was also able to avoid multiples for labs and infusion. I started the day in the lab for a blood draw and they inserted the IV. It was left in for the infusion. In fact, when I was doing Kyprolis on back-to-back days, they left the IV in over night so I didn't need a second stick the second day. They just put a light sleeve over the line. I never had a problem. I don't know what your center protocols are, but it wouldn't hurt to ask.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Paul, diagnosed yesterday, about to start KRD
Hi Paul,
You wrote:
I agree 100% with this. My myeloma specialist is also a transplant specialist and it is great having one point of contact and one person calling the shots. I really believe that I would not have had as great of an outcome if my myeloma specialist was not also a transplant specialist. Since, in my opinion, myeloma doctors are behind other cancers with respect to using MRD testing and immunotherapy, I was able to incorporate both into my therapy back in 2010-11 when I was diagnosed when many other patients did not even know what MRD testing was. (The immunotherapy in my case was an allogeneic stem cell transplant.)
As a side note, I changed insurance coverage 2 times since being diagnosed and once while I was on therapy back in 2011. It does cause some "paperwork" headaches, but I am sure you will work everything out. I have also mentioned this in the past, but will mention it again since we, unfortunately, get new members in the "club" that do not see old posts. I had a case manager assigned by the first insurance company (the one I had when diagnosed) and insisted that the second assign me one. They were a great help getting my therapies approved and helping me work with the insurance company. You should check if your new insurance company provides case managers for multiple myeloma patients.
Positive vibes being sent your way that you also have a very successful outcome with your therapy.
Mark
You wrote:
I had such a sweet deal where my myeloma doctor was going to be the same as my transplant doctor - a rare case, I've heard. Now I am looking at multiple doctors with multiple hospitals and possibly more (and redundant) tests. Sounds like chaos.
I agree 100% with this. My myeloma specialist is also a transplant specialist and it is great having one point of contact and one person calling the shots. I really believe that I would not have had as great of an outcome if my myeloma specialist was not also a transplant specialist. Since, in my opinion, myeloma doctors are behind other cancers with respect to using MRD testing and immunotherapy, I was able to incorporate both into my therapy back in 2010-11 when I was diagnosed when many other patients did not even know what MRD testing was. (The immunotherapy in my case was an allogeneic stem cell transplant.)
As a side note, I changed insurance coverage 2 times since being diagnosed and once while I was on therapy back in 2011. It does cause some "paperwork" headaches, but I am sure you will work everything out. I have also mentioned this in the past, but will mention it again since we, unfortunately, get new members in the "club" that do not see old posts. I had a case manager assigned by the first insurance company (the one I had when diagnosed) and insisted that the second assign me one. They were a great help getting my therapies approved and helping me work with the insurance company. You should check if your new insurance company provides case managers for multiple myeloma patients.
Positive vibes being sent your way that you also have a very successful outcome with your therapy.
Mark
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Mark11
Re: Paul, diagnosed yesterday, about to start KRD
I just completed my first week of treatment sessions (Kyprolis and dexamethasone), the first one yesterday late afternoon and the second one early this morning. I did have my typical issue with finding decent veins without multiple tries (it took 3 tries for the IV), but we got a good vein for the blood draw on the first try both yesterday and today. The nurse made the same suggestion that Mark did about leaving the IV line in overnight for the treatment this morning. Such a great idea! It relieved a large part of my anxiety going into today's appointment.
Other than that, things went ok – none of the side affects have reared their ugly heads yet. My energy levels are still good with no major fatigue, and my appetite is still good – no nausea. I went into the office and worked this afternoon, and felt fine. I continue to be hopeful that I will be one of the lucky few that comes through this with no significant problems.
I go in for the second week treatments next Thursday and Friday, then a third week of treatment and an off week, then we reassess and almost certainly go forward to the second cycle of treatment.
I should be starting my Revlimid next Tuesday. There was a delay in getting it approved, but we are back on track. Who knows, maybe it will end up being helpful to start this later so that we can see what my response is to the Kyprolis and dex before adding the Revlimid into the treatment regimen.
The jury is still out on whether I ask to get a port installed. With the option to leave the IV line in overnight, this might still be manageable without the port. I will re-assess this after the treatments next week.
I am also in discussions with the hospital, Blue Cross, and my company about keeping my stem cell transplant procedure at MD Anderson instead of moving it to Houston Methodist due to the 'out of network' issue that cropped up this week. It sounds like there is a good possibility that I will be able to stay with MDA for the transplant and keep my myeloma / transplant doctor for the whole treatment. That would be such a weight off of my shoulders.
Meanwhile, thanks to everyone for your support and suggestions, and best of luck to all of us!
Other than that, things went ok – none of the side affects have reared their ugly heads yet. My energy levels are still good with no major fatigue, and my appetite is still good – no nausea. I went into the office and worked this afternoon, and felt fine. I continue to be hopeful that I will be one of the lucky few that comes through this with no significant problems.
I go in for the second week treatments next Thursday and Friday, then a third week of treatment and an off week, then we reassess and almost certainly go forward to the second cycle of treatment.
I should be starting my Revlimid next Tuesday. There was a delay in getting it approved, but we are back on track. Who knows, maybe it will end up being helpful to start this later so that we can see what my response is to the Kyprolis and dex before adding the Revlimid into the treatment regimen.
The jury is still out on whether I ask to get a port installed. With the option to leave the IV line in overnight, this might still be manageable without the port. I will re-assess this after the treatments next week.
I am also in discussions with the hospital, Blue Cross, and my company about keeping my stem cell transplant procedure at MD Anderson instead of moving it to Houston Methodist due to the 'out of network' issue that cropped up this week. It sounds like there is a good possibility that I will be able to stay with MDA for the transplant and keep my myeloma / transplant doctor for the whole treatment. That would be such a weight off of my shoulders.
Meanwhile, thanks to everyone for your support and suggestions, and best of luck to all of us!
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul, diagnosed yesterday, about to start KRD
Paul,
I had a port installed in February 2012 and did my transplant July 2012. I kept my port in. No one discussed taking it out. I did have to have a double lumen port installed on the other side during my transplant, since my port was not durable enough (according to my transplant doctor). The double was removed when I was released to come home.
I did tandem transplants and had a PICC line for the second one. It never did draw blood well, so they used my port for blood draws at least once a week. I guess each doctor is different.
Just wanted to pass along I got to keep mine. The doctor removed my port in 2014 since I had not received treatment since my transplant, and I was having one blood draw every three months for monitoring. I am back on a low dose of Revlimid now, but still one stick every three months.
Best of luck in your decisions.
I had a port installed in February 2012 and did my transplant July 2012. I kept my port in. No one discussed taking it out. I did have to have a double lumen port installed on the other side during my transplant, since my port was not durable enough (according to my transplant doctor). The double was removed when I was released to come home.
I did tandem transplants and had a PICC line for the second one. It never did draw blood well, so they used my port for blood draws at least once a week. I guess each doctor is different.
Just wanted to pass along I got to keep mine. The doctor removed my port in 2014 since I had not received treatment since my transplant, and I was having one blood draw every three months for monitoring. I am back on a low dose of Revlimid now, but still one stick every three months.
Best of luck in your decisions.
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Music box lady - Name: Margie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 60
Re: Paul, diagnosed yesterday, about to start KRD
Well, it's Saturday morning after my second week of Kyprolis and dexamethasone treatments and so far things are going OK mostly.
My 'Hard Stick' condition has finally come to a head. The stick for the blood draw before the treatment.was done with 1 attempt. It took 2 nurses 4 tries to get a good vein for the IV this week (3 times last week) and they had to do some 'hunting' with the last attempt. That was the last straw! I'm scheduled to have a port installed next Thursday. On the plus side, this should really help alleviate my stress going forward. On the downside, this really messes up my schedule next week as I deal with rush hour traffic to get up to the MDA Main Campus for the pre-op testing and consultation on Monday and then the surgery and chemo treatment up there on Thursday. Still, the benefits long term will outweigh the short term stress.
I finally received my first delivery of Revlimid and started taking it on Tuesday, so I am finally up to full speed on my 3-drug regimen.
As far as side affects:
Energy level is still OK but not stellar. I was able to hit my daily walking target several days this week, which was a great sense of accomplishment.
My blood pressure was fairly high right after my treatment yesterday - 117/81 in the morning, ~135/80 before treatment, 150/96 after. By the time I got home it was back down to 131/82 and was still there this morning so I am going to have to watch this.
I haven't had any nausea and have not had to alter my eating habits much yet, but I am noticing a metallic taste, especially first thing in the morning and it seems to taint the first few bites of breakfast, but it becomes much less noticeable after I have some food.
As always, thanks to everyone for your support, encouragement and advice!
My 'Hard Stick' condition has finally come to a head. The stick for the blood draw before the treatment.was done with 1 attempt. It took 2 nurses 4 tries to get a good vein for the IV this week (3 times last week) and they had to do some 'hunting' with the last attempt. That was the last straw! I'm scheduled to have a port installed next Thursday. On the plus side, this should really help alleviate my stress going forward. On the downside, this really messes up my schedule next week as I deal with rush hour traffic to get up to the MDA Main Campus for the pre-op testing and consultation on Monday and then the surgery and chemo treatment up there on Thursday. Still, the benefits long term will outweigh the short term stress.
I finally received my first delivery of Revlimid and started taking it on Tuesday, so I am finally up to full speed on my 3-drug regimen.
As far as side affects:
Energy level is still OK but not stellar. I was able to hit my daily walking target several days this week, which was a great sense of accomplishment.
My blood pressure was fairly high right after my treatment yesterday - 117/81 in the morning, ~135/80 before treatment, 150/96 after. By the time I got home it was back down to 131/82 and was still there this morning so I am going to have to watch this.
I haven't had any nausea and have not had to alter my eating habits much yet, but I am noticing a metallic taste, especially first thing in the morning and it seems to taint the first few bites of breakfast, but it becomes much less noticeable after I have some food.
As always, thanks to everyone for your support, encouragement and advice!
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul, diagnosed yesterday, about to start KRD
Time for what has evolved into my weekly update. I was up at 4 a.m. this morning, so I let my wife sleep in, taking the dogs out, taking my vitals and loaded them into my tracking spreadsheet, getting laundry going, getting some breakfast, and starting my log update.
This has been another busy week, but a good week for a number of reasons.
A. I was informed by the hospital finance rep that I am now approved to have my transplant procedure done at MD Anderson with my current doctor instead of having to arrange the procedure with another hospital due to in-network issues. This was the last major insurance hurdle and I am glad to have it resolved. One less thing to worry about. Awesome!
B. My port was installed on Thursday. No more multiple sticks for each treatment session! Awesome squared!
C. This was my third week of treatment, so I am going into my off-treatment week. Awesome cubed!
I am continuing to tolerate the treatments well, with little bothersome side effects yet, so I am continuing to go into work regularly.
I drove up to MD Anderson main campus with my mother for EKG / blood draw and consult with port surgeon. Traffic was a mess, backed up on I-45 due to accidents and probably Super Bowl Party traffic, but we made it on time.
Thursday was port installation day, so no food or drink after midnight meant that I was very hungry by the time I got out of surgery at 2 p.m. It was a long day, with a drive up to the main MD Anderson main campus with my wife Joy and a morning blood draw, surgery to install the port at about noon, and then treatment infusions around 5 p.m. The surgery went very well. The doctor installed a line on the port so that I could use it for treatment infusions. Since the surgery was delayed, the treatment infusion was delayed too, and we didn't get back home until 7:30 p.m. A quick bite and I was ready for bed.
They left the line in for the treatment infusion on Friday (Yeah!)
Friday I was up and off to work with a good energy level. No pain to speak of, but some stiffness. At the 2 p.m. infusion session the nurse told me my potassium level was slightly elevated, so I will have to discuss this with my doctor at our consult next week. The nurse was impressed with the port installation, saying there was little bruising. The port worked like a champ for the treatment – so much relief from having the line already installed, and NOT having to worry about multiple sticks!
We are looking forward to the consultation with the doctor next week to go over the test results and see what affect the treatments have had on my numbers.
Best of luck to everyone out there and thanks for your continuing thoughts, encouragement and support!
This has been another busy week, but a good week for a number of reasons.
A. I was informed by the hospital finance rep that I am now approved to have my transplant procedure done at MD Anderson with my current doctor instead of having to arrange the procedure with another hospital due to in-network issues. This was the last major insurance hurdle and I am glad to have it resolved. One less thing to worry about. Awesome!
B. My port was installed on Thursday. No more multiple sticks for each treatment session! Awesome squared!
C. This was my third week of treatment, so I am going into my off-treatment week. Awesome cubed!
I am continuing to tolerate the treatments well, with little bothersome side effects yet, so I am continuing to go into work regularly.
I drove up to MD Anderson main campus with my mother for EKG / blood draw and consult with port surgeon. Traffic was a mess, backed up on I-45 due to accidents and probably Super Bowl Party traffic, but we made it on time.
Thursday was port installation day, so no food or drink after midnight meant that I was very hungry by the time I got out of surgery at 2 p.m. It was a long day, with a drive up to the main MD Anderson main campus with my wife Joy and a morning blood draw, surgery to install the port at about noon, and then treatment infusions around 5 p.m. The surgery went very well. The doctor installed a line on the port so that I could use it for treatment infusions. Since the surgery was delayed, the treatment infusion was delayed too, and we didn't get back home until 7:30 p.m. A quick bite and I was ready for bed.
They left the line in for the treatment infusion on Friday (Yeah!)
Friday I was up and off to work with a good energy level. No pain to speak of, but some stiffness. At the 2 p.m. infusion session the nurse told me my potassium level was slightly elevated, so I will have to discuss this with my doctor at our consult next week. The nurse was impressed with the port installation, saying there was little bruising. The port worked like a champ for the treatment – so much relief from having the line already installed, and NOT having to worry about multiple sticks!
We are looking forward to the consultation with the doctor next week to go over the test results and see what affect the treatments have had on my numbers.
Best of luck to everyone out there and thanks for your continuing thoughts, encouragement and support!
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul, diagnosed yesterday, about to start KRD
Just wanted to followup and say that boy was everyone right about this. As it turns out, my "great veins" were no match for Kyprolis. I started my KRD last week, and no side effects other than some burning in the vein towards the end of the infusion. I was re-using my IV from the day before.
At the site of the first two infusions, the vein has turned brown-ish.
Short-term fix was to slow down the drip rate and to start another IV.
Long-term I'm having a port installed next week.
Good times.
At the site of the first two infusions, the vein has turned brown-ish.
Short-term fix was to slow down the drip rate and to start another IV.
Long-term I'm having a port installed next week.
Good times.-
PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: Paul, diagnosed yesterday, about to start KRD
Chris,
Sorry to hear about your vein issues, but I'm sure that you will really appreciate the port. I already don't know how I did without mine. I am able to leave the line in overnight, so even with the port, it is just one stick per week and I know that they will find the port first try.
If possible, make sure that they install the high flow version. I understand that it can be used for PET scans and such.
Good luck!
Sorry to hear about your vein issues, but I'm sure that you will really appreciate the port. I already don't know how I did without mine. I am able to leave the line in overnight, so even with the port, it is just one stick per week and I know that they will find the port first try.
If possible, make sure that they install the high flow version. I understand that it can be used for PET scans and such.
Good luck!
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul, diagnosed yesterday, about to start KRD
It's hard to believe, but I completed my first month-long cycle of myeloma treatment last week, so I was off of the IV drugs (Kyprolis and dex) last week but continued with the Revlimid, since I got a late start on that. Overall, I tolerated the first cycle very well, with no nausea or other significant side affects. I actually felt much better last week, almost feeling like I used to before I started treatment.
We had a consultation with my myeloma specialist this morning to go over the test results after the first treatment cycle. The results were excellent. After just one month, my kappa free light chain level went from 259 to 51, which resulted in the kappa-lambda ratio dropping from 42 to 5. My IgG went from 1644 to 854. Based on these results, we are proceeding with the second cycle and probably a third cycle of treatment before going ahead with the stem cell transplant, probably in early June.
Onward!
Paul
We had a consultation with my myeloma specialist this morning to go over the test results after the first treatment cycle. The results were excellent. After just one month, my kappa free light chain level went from 259 to 51, which resulted in the kappa-lambda ratio dropping from 42 to 5. My IgG went from 1644 to 854. Based on these results, we are proceeding with the second cycle and probably a third cycle of treatment before going ahead with the stem cell transplant, probably in early June.
Onward!
Paul
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul, diagnosed yesterday, about to start KRD
Paul,
It's so great to read all your updates. Your experiences with Kyprolis are sounding very similar to mine. I responded well and the side effects are very limited.
I'm also glad to hear you are happy with your decision to have a port installed. I was resistant to giving in to such a "permanent" concession to myeloma, but it is so much better than IV pokes I have gotten over it.
Best wishes for continued success.
It's so great to read all your updates. Your experiences with Kyprolis are sounding very similar to mine. I responded well and the side effects are very limited.
I'm also glad to hear you are happy with your decision to have a port installed. I was resistant to giving in to such a "permanent" concession to myeloma, but it is so much better than IV pokes I have gotten over it.
Best wishes for continued success.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
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