[K_Shash]

Re: Recently diagnosed with multiple myeloma

by K_Shash on Thu Dec 18, 2014 9:36 pm

I joined the Myeloma Beacon only a few days ago. I wish I had read this discussion first..

I was diagnosed and informed of the high kappa free light chains in my blood test on the day before Thanksgiving. I had known that there was a lot of protein in my urine, but nearly all the blood tests had been normal. The kidney function was otherwise normal, too.

I had my X-rays (showing multiple lesions) and the bone marrow biopsy showing 30% plasma cells. The most baffling problem has been that repeated blood tests show everything normal, except, of course the kappa free light chains that are now as high as 978. and urine tests fail to show any M-spike. The only thing shown is a spike in the IgG monoclonal band, about 2,200 mg of IgG in the 24 hour Urine tests. The protein number was the same in two separate 24-hour urine tests, where the total volume varied from 1,313 mL to 2,285 mL! I asked my oncologist and he could not give me any specific M-spike number. Also, I do not know if I am Stage 1 or Stage 2.

Back to this discussion:

I started my chemo yesterday. Maybe because I weigh only 125 lbs (57 kg), I have been started on only 20 mg dex and 15 mg Revlimid. I have no idea what Velcade dose I was given yesterday. Last night was rather rough but, as another poster had suggested in my Introduction discussion thread, the Benadryl helped me get at lease 3 hours of sound sleep. I am now wondering how the cumulative effect is going to affect me. I have had no other symptoms whatever and I am continuing with my physical activities and feel vigorous and have a good appetite.

I have been reading a lot about the ASCT and though a few family friend are urging me to consider it, I really want to avoid it. I saw that Nancy from Philadelphia had a relapse three years after her transplant. My pulmonologist friend in Southern California has a patient that is on his 15+ year and on maintenance therapy, without ever having a transplant. So far, I am planning on getting through the next 5 years with just the RVD therapy and of course only after seeing some major improvements in about three months. I hope the dozen or so 'promising drugs' that are currently in various phases of patient trials find a better cure for us all in the next few years!

I have a good supply of Zofran, just in case I start getting nausea.

Thanks, Dr. Santiago and all the other writers for sharing your experience / reactions. I will do my best to document my side effects on a weekly basis.

K_Shash

[mikeb]

Re: Recently diagnosed with multiple myeloma

by mikeb on Sat Dec 20, 2014 12:23 pm

Hi K_Shash,

Congratulations on starting your chemotherapy. That was a big day for me - scary, but at the same time liberating, because I knew I was finally starting to take action against the myeloma. Speaking of the first day of chemo, I highly recommend Sean Murray's clever "'Twas the First Day of Chemo" column, which was published in The Beacon this past week.

On a more cautionary note - you said, "So far, I am planning on getting through the next 5 years with just the RVD therapy and of course only after seeing some major improvements in about three months." If there's one thing I've learned about multiple myeloma, it's that you can't "plan" how things are going to go. Multiple myeloma is a tricky disease; we all have lots of twists and turns in dealing with it. You need to just take things one step at a time, evaluate where you are after that step, and then move ahead to the next step.

Best wishes for successful treatment to you! Please keep us posted on how things go for you.

Mike

[K_Shash]

Re: Recently diagnosed with multiple myeloma

by K_Shash on Sun Dec 21, 2014 10:16 pm

Hello Dr. Santiago.

I have been reading your posts over and over, again. I am sorry if my earlier reply was too long and more about my condition. However, after re-reading about your experience, I am avoiding sugar and making sure that I do not drive right after a big meal. These simple precautions could be life saving measures! And there is no harm my avoiding sugar and Big meals, in the first place.

Thanks again, for sharing your experience. Hope to read about how you are doing with the new dosage of the chemo drugs.

Thanks Mike, I will keep an open mind about the ASCT. I just hope I get very good CR or VGPR after the 3 X 3-week cycles of Revlimid and a total of 12-week treatment of this chemo. I would like the ASCT to be the treatment of last resort. I have read the 5 or 6 detailed accounts of the ASCT experience posted here at the Myeloma Beacon and that is quite an ordeal! I believe I am in between Stage I and Stage II and have had no physical symptoms. So far, and it has been only 4 days so far, I have had minor discomfort and side effects from the chemo.

Update on Day 5 of Chemo

Must be the Revlimid after the 4th dose last night. Whole body exhaustion, but strong appetite.
I hope a good breakfast, banana, and the sugar in coffee will give me the needed boost for a good walk. No more sugar in my coffee from tomorrow.

My heart starts racing as the heart rate goes up when I walk my usual fast pace. I have to slow down after a few hundred yards of fast paced walk.

The red / pink patch near the Velcade shot is tolerable, seems to be darkening after a little steroid cream twice a day (as ok'ed by the oncologist), and the patch did not burn during a warm shower. Thanks to Multibilly, I read the post he referred me to, right away, about the air bubble in the Velcade injection, and sent the info to my oncologist.. My oncology team should take this seriously; particularly with an institution like the Mayo Clinic using this technique.

No real problem sleeping last night. Must have been the exhaustion. I did have to drink an Ensure at around 2:30 a.m. Then I could go back to sleep till almost 7:00 a.m. I was cautioned about Benadryl and I hope I do not need it.

K_Shash

[K_Shash]

Re: Recently diagnosed with multiple myeloma

by K_Shash on Thu Jan 08, 2015 11:11 pm

Hello Dr. Santiago,

Happy New Year!

I have not seen any new posts from you since November 30. I am in the fourth week of my fist 4-week cycle of 3 weeks of daily Revlimid, and weekly dose of dex and a weekly shot of Velcade. I do take the aspirin and acyclovir. I just completed the 3-week Revlimid 2 nights ago. So far, I am coping quite well by adjusting my exercise and activities with the up and down days of the weekly chemo. I learned a lot from your experience and cut down on my sugar, etc.

I would appreciate your sharing your recent experience, as you must have completed at least one more cycle and you should be half way into the third 4-week cycle (if you needed it).

I hope you have responded well to the chemo and your myeloma is in remission. Are you planning on ASCT or harvesting your stem cells and storing them for future use?

K_Shash