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Hophop4's Recent CancerCompass Activity

  • Hophop4 has replied to a post on the message board

    Krypolis is the next generation to Velcade.  It didn't bring my numbers down after being on it almost a year.  I also had Dex and Cytoxin along with it.  I think my neuropathy first started when I was on Thalimid.  Everyone said it was the Velcade but I still say it was Thalamid. Anyways I didn't have much side effects from the Velcade IVs.   It was the Velcade injections that I couldn't...

    April 16 at 7:23 PM view post
    • Hophop4 has replied to a post on the message board

      Sorry for your cousin.  She needs to find a MM Specialist in her area.  If there are not any, is there any chance she can come here to the US.  I see so many people that travel from out of the country just to get treatments here.  Not sure if this is an option for her.  Wishing her the best.

      April 16 at 1:43 AM view post
      • Hophop4 has replied to a post on the message board

        My Kappa/Lambda Ratio is now 63 which is High.  Kappa Light Chains are 448 still High but coming down.

        April 15 at 10:59 PM view post
        • Hophop4 has replied to a post on the message board

          You can click on my name and read my profile from the beginning.

          April 15 at 10:48 PM view post
          • Hophop4 has replied to a post on the message board

            Yes I have been on Velcade three different times.  The first two were IV and the last were the injections which I was on for two months.  I had a lot of shortness of breath and couldn't walk more than two steps and could not handle the injections so they had to stop it.  I was fine after I stopped and that is when they started me on the Kyprolis.  I also was on Thalimid way back when.  T...

            April 15 at 10:41 PM view post
            • Hophop4 has replied to a post on the message board

              I just completed a first cycle of Revlimid after being on Krypolis for a year and did not have good results from that.  I had been on Revlimid before maybe 2 or 3 years ago and had good results but was taken off it when I started to get several infections.  Anyways after completing the first cycle now and just got my lab and doc report this week  my Kappa Light Chains went from 1000 down to 446.  ...

              April 15 at 8:11 PM view post
              • Hophop4 has replied to a post on the message board

                By the way, with Medicare any treatments such as the carb IV that is done at Sloan or in a Doctor's office should be covered by Medicare and the Supplement.

                June 12 at 2:21 AM view post
                • Hophop4 has replied to a post on the message board

                  If you are planning to use the original Medicare Plan you will need Medicare Supplement Policy PLUS a Medicare Drug D Plan. Any provider that will accept original Medicare, the Supplement Policy will automatically pay for the 20% that Medicare does not cover as long as the treatment is approved.   All the Supplement Plans (with all the ins companies) are the same except for the premium you pay for...

                  June 12 at 2:18 AM view post
                  • Hophop4 has replied to a post on the message board

                    It could also be the Dex too. I am on 20 ml pills before I get the IV first day and they add 10 mil to the IV on the 2nd day.  Do you notice after you get the carf you have a odor you can smell?  This happens to me but I think I can only smell it.  Hop

                    June 04 at 2:11 PM view post
                    • Hophop4 has replied to a post on the message board

                      Are you on Dexamethasone??   I get the cramps on my legs at night but not from eating.  I am sure it is from the Dex.  I am on Krypolis, Cytozan and Dex.  I got the cramps when I was on Rev and Dex (again) but was off everything for a year and no cramps but as soon as I started back on Dex it started up again. Hop

                      June 03 at 2:56 PM view post
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                      About Hophop4

                      Patient, Survivor
                      Multiple Myeloma

                      I was diagnosed with Multiple Myeloma October 2006. At that time I had spine surgery for a large tumor on the spine. Had a Stem Cell Transplant March 2009 at MDAnderson in Houston. I am in remission at present time. Started on Thalomid for maintenance on January 20, 2010. I started with a 200 dosage and was dropped to 100 and then on 50 due to my Platelets dropping. I have currently switched to Revlimid 5 mg for maintenance.
                      Update: In March 2011 my test results showed my plasma cells have returned and possibly myeloma is back. Increase of Rev to 25mg and Velcade w/dex was done for one cycle with good results then a second cycle of Rev 25mg and Velcade. I completed 4 cycles of Rev 25 mg and Velcade and should be back in remission. Update: In November 2011 counts were acting up so they added dex 20 mg once a week with the Rev 25 mg and I have been back in remission once again.
                      Latest Update June 2013: Last Nov/Dec I was in the hospital with lung problems and infections. While on antibiotics I stopped my maintenance Rev/Dex. I have been off maintenance now 7 months. Counts are still holding good and both my oncologists agree to continue to keep me off Rev/Dex unless there is change in my counts.

                      Update: August, 2013: It finally happened after being off maintenance 10 months my Kappa Light Chain has increased from 40's to 178. Waiting for treatment plan from both my doctors. Most likely will be Velcade for 4 cycles.

                      Update: Nov. 2013. After being off Rev/Dex for one year I am now on Velcade shots twice a week for two weeks and one week off. I am on my second cycle now and blood labs are showing a good response. Kappa Light Chains went from 1237 to 414. I will do three more cycles after this one then go on maintenance Velcade.

                      Update: Velcade wasn't working so after one month break was put on Kyprolis with Dex and now Cytoxin has been added.

                      New update 3/2015: After being on Kyprolis/Cytoxin and Dex for a year we have decided that it was not working for me. My last lab reports showed increase in mumbers again so I am off it now. I just started back on Revlimid 25mg with Dex 20 mg two times a week.

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