[Marc A-P-]

Marc's introduction

by Marc A-P- on Fri Dec 23, 2016 9:01 am

This is such an amazing journey, but also really scary.

I can have good results and then – wham! – something comes up that really is upsetting. Me drafting this so early in the morning is a consequence of such upset!

I was diagnosed at the end of March. I started treatment in early April almost at the same time that I started dialysis for renal failure.I do not have lytic lesions, but had bone pain and probable broken ribs once or twice (1-2 ribs from stressing, then real bad as I leaned on a narrow object with my ribs).

I come form an inconsistent background where I partied plenty, did not get enough rest. Really was a workaholic, but also ran marathons in respectable time, as well as 10k's.

I vacillate between fairly good diet and bingeing on chocolate. I drank in the same pattern when younger (20 years ago), but really have no urges for more then 1-2 drinks about once every 1-2 weeks and follow that.

My kappa free light chain level started at about 2000. My IgG started at about 2800. Other immunoglobulin numbers were extremely low, starting, and or ranging from, 22 to < 7. The "other" immunoglobulin numbers have trended towards a very minor increase that started in October to current levels around 20 to 12.

I am an optimist but I I have a strong trend towards pragmatism as well. The current decreases in the free light chain and IgG levels have me hopeful, but I am starting to note that there is some correlation between by treatment and high blood pressure levels.(Current kappa free light chain level is 896, current IgG level is 1480).

When I started this whole journey I was against taking the blood pressure meds, but I have sur­rendered to my fear, and take them daily. During the day, or breaks in my treatment regimen once every three weeks, my blood pressure is trending towards more reasonable, ranging from 120 / high 60's to 150 / high 80's. At troubling times I am about 178 / low 90's, and when it was very high 200 / 100.

Anyways, I had my Kyprolis, Doxil, and dexamethasone infusion last night and my blood pressure has ranged to that high side. The reason I got actual numbers was because I was going to hook up my peritoneal dialysis and checked, then rechecked, the pressure. I will talk to my oncologist today, but take note of my body's feelings over these past months of treatment and would say that I may have had this substantial increase in blood pressure frequently when I get my infusions on the Thursday schedule.

I apologize for jumping in without a lot of personal information but I will add that I am 61 year old behavior analyst with 3 wonderful children, a supportive wife, and a massive support com­munity that has been a real Godsend. These items help me weather my messed up kidney function, the fairly intensive treatment I have had with, one significant change in it back in late spring to the current regimen (which is as I described, with the addition of oral Pomalyst.).

I had one bout with probable pneumonia, and initially, when on hemodialysis, had many migraine headaches that were possibly linked with the high blood pressure, as well as changes in my body ph, or other levels. They would go away after about half a day, and did not deter my routines (too much).

Well I AM positive, but a bit fearful. I have great faith in my medical team, but wonder if there is a more sure way of bringing a stronger trend of decrease in my kappa free light chain level. They jump around quite a bit. The IgG really does have a consistent established down­wards trend, even though the rate of change varies.

If you wish to commiserate, feel free. I want to give and receive info from those of you who feel like it.

My thanks to you for even looking at this summary!

Marc

[Cheryl G]

Re: Marc's introduction

by Cheryl G on Tue Jan 17, 2017 8:58 pm

Hi Marc,

I know it's been a while since your introduction. I'm sorry no one welcomed you to the forum at the time. I guess it was just the time of the year – a lot of people are really busy around December 23!

In any case: Welcome. Sorry you have to be here, but welcome.

I hope you've continued to respond to the treatment regimen you've been receiving. The Kyprolis, Doxil, and dexamethasone regimen is unusual for someone with newly diagnosed multiple myeloma. So it will be interesting to hear what sort of response you get in the longer term. (It sounds from what you wrote that the regimen wasn't necessarily the first one that you were on. Is that true?)

Best wishes,
Cheryl

[DaleJC28117]

Re: Marc's introduction

by DaleJC28117 on Wed Jan 18, 2017 8:24 am

Hi Marc,

Welcome to the forum. Sorry you have to be here, but you are in the right place for questions. I do not usually post too much on here, but I look everyday since my husband's diagnosis last year for new treatments coming out or just information in general.

My husband was diagnosed February of last year with stage 3 multiple myeloma, IgG lambda type. He initially started with the Revlimid, Velcade, and dexamethasone (RVD), but after 6 cycles he stopped responding. They could not get his M-spike lower than 1.0 g/dL (10 g/l), so off to the transplant in August. It was 1.2 g/dL by then.

At his 100 day follow up, his M-spike remained at 0.8 g/dL. Our oncologist at Moffitt put him on the Kyprolis, Revlimid and dex (KRD) for consolidation to try and push the M-spike down further. So far so good here. Numbers trending down.

They are coming up every year with new treatments, so please hang in there. In the interim, there are some amazing people here who are either on this journey, or caring for a loved one that is. Where there is love, there is always hope. Good luck with your treatments!