New member from Texas

Hi Everyone,

I just joined the group and thought I'd let you know where I'm at at in theis journey.   I'm 64, had polio at age 6, have had post--olio syndrome for about 20 years and live in east Texas

2/08 I was diagnosed wiht a localized (DCIS) breast cancer, had a lumpectomy and 7 weeks of radiation.  The docotrs thought all the pain and swelling I had during radiation were just a bad reaction to the treatments.  However, I had an internal staph infection that wentundiagnosed for 3 months.  When it broke through my lumpectomy scar, I was put on antibiotics.  I had 2 drainings, 4 antibiotics and a surgery in Oct. that left me with an egg sized hole that had to heal form the inside out.  The hole is "almost filled in now.

My white count had been just below normal for several years and I had, had a number of upper repsirtory infections,  but the rest of my blood counts were in the normal range, including total protein.  But, blood work on 6/28/08 showed lots of numbers that were either too high or too low and continued to be so into the winter.  These were attributed to the bad staph infection and numerous antibiotics.  I've now been anemic and had low white counts for a year.

4/09 With my blood work still looking bad, my local onc recommended a bone marrow biopsy which was done 4/27.  It revealed that I had multiple myeloma - level II.  I had likely had MGUS or smoldering for years,  and I think the battle with the staph infection tipped me over into active myeloma.

Test results for 5/9:  LgG kappa light chain, no bone involvement per skeletal x-rays except general mild osteopenia, kidneys were fine,  M-spike 3.5,  IgG 5415, Beta2 Micro 2.95, LDH normal , creatine normal, but I do have the 13q 14.3 deletion.

Treatment:  I am in the middle of my third round of 25mg Revlimid, low dose dex (40ms once a week), a 325mg asprin daily and Aridea once a month.   After the first round my M-spike had dropped to 2.8 and IgG to 4099.  Tests 7/27 showed M-spike of 1.9 and IgG of 3106, so the meds apprear to be working.

Side effects:   Rev -- some mild neuropathy  involving lips, hands and feet and neutorpenia. ANC was so low at the end of the second round, that I had 5 injections of Neupogen which raised the counts so I could continue treatment.   Dex - crashing for a couple of days each week, really bad acid reflux (now on Protonix which helps), mouth ulcer, insomnia.

I've already seen a MM specialist at the Baylor transplant center in Dallas and a ASCT is an option in the future.

I'm still learning, but have done a lot of research and am very active in my treatment plans.

Best to all,

Dotty

 

 

Welcome Dotty,

This is a very special group of people who are here to help u along the way!

Gayle

Hi Dotty!!  For someone so newly diagnosed you are magnificent!!  I have never read of anyone so well read so early on and able to articulate exactly what is happening to them so factually -- Well Done!!  On top of this you have already been through the mill, so to speak, along the way and you are still so positive.  I am most impressed and just want to welcome you to this message board -- after 6 years it is the best one that I have found for meeting people who quickly become an extended family, having easy/simple access, and having almost instant responses to any questions you may have from a wide variety of people at all stages of Myeloma as well as medico's when necessary.  I look forward to hearing more of your journey and getting to know YOU.  Cheers, Cath in Australia

Thanks for the welcome and encouraging words, Gayle & Cath.   I've been reading this board for about a month and have already learned a lot.    One thing I'm going to ask my onc when I see her on the 31st is about having an MRI or PET scan, just to make sure there is NO bone involvement.

I've always been one to research any medical problem I've had, ask lots of questions and be active in my treatment.    Thankfully, my  internist and local onc are very open to my approach.    I plan to fight this thing and live many, many years to come!

I hope to be able to contribute to the board,  as so many of you do.

God Bless,
Dotty

 

Hey Dotty,

  We are just down the highway a bit (near Austin).  My spouse was diagnosed with MM after hurting his back in early June.  We have visited the Methodist SCT center in San Antonio and are awaiting the 4th round of chemo before considering the SCT.  At this point, Mike is on the Revlimid, Velcade and Dex.  He takes Dex 40 mg. each monday, The Revlimid is on the 21 day cycle, which we start up again next week....and he takes Veclade on a 21 day cycle with two intravenous administrations per week (Mon and Thurs) for two weeks and then a week off.

When his was found he was in Stage III.  His kidneys had started to fail, but he is one of those rare birds that is non-secretory, thus it is harder to detect in the blood.  They have to do the 24 hour urine to find where he is on things and of course do the BMB.  He secretes Kappa light chains...and his immunoglobulin level is down of course.   Right now anemia and swelling of the feet are the biggest things.... and of course  fatigue.

Sounds like you have been through so much...and as the other say, you are so positive and that inspires me so much.  As a caregiver I want to help Mike out....but I also need to respect that there are things he needs to do for himself.  KNowing when to move in, but when to move out are still being learned...but I believe we are getting there.

Hope they get this beast under control for you soon.  Please feel free to email me personally as I would love to ask some more questions about Baylor.  AMW

From Anna,

Hi Dotty, Welcome to the group. Dad has had MM almost 11 years.  Man is sounds like you've really been through it.

Your friend,

Anna

Thanks to everyone for the public and private welcomes to the group.   It really does help knowing there are others farther along in treatment who can offer suggestions based on prior experience.

God Bless,

Dotty

 

On 8/21/2009 djs45 wrote:

Thanks to everyone for the public and private welcomes to the group.   It really does help knowing there are others farther along in treatment who can offer suggestions based on prior experience.

God Bless,

Dotty

Hi Dotty fellow East Texan here. I live on Lake Palestine formerly in Tyler. I was diagnosed in Sept 2006 and am being treated there in Tyler since then. I had my stem cell transplant at the transplant center at Baylor on June 12th of 2009. I can't say enough about the staff at Baylor. Starting with Dr Berryman and Dr Pinero(sp) all the way to the persons who empty the trash cans. They are great! The drs there purchased about 7 apartments at the Twice Blessed Apartments and are offered FREE to their transplant patients who live over 50 miles from Baylor. And these apartments are not like a motel room with a kitchen these are fully furnished 1 and 2 bedroom apartments complete with washer and dryers. All you bring is food and their 2 or 3 grocery stores close by.  I was so impressed by the knowledge and authority the nurses have. The drs have set down guide lines for them to follow and they don't have to go hunt a dr every time decision needs to be made like can I have some pain meds or how about some sleeping meds. The drs there rotate hospital duty once a month and leave the remaining 4 drs to handle to day time patients. This leaves one dr to be on the floor at all times if needed to an almost immediate response to a problem the nurses can't handle. There wasn't even a dr in my room when I was given stem cells back. The nurses did it. I just can't say enough good things about them. One word of caution though. We have a $30 co-pay for dr visits. The first time we went there my wife wrote a $30 check for our co-pay and they said we don't need that. You don't owe us anything. Not true. Just last week we got a huge bill with $30 entries galore. So be sure to check that out. That would be the only negative thing I would have to say. I would certainly talk to you personally if you would like. My personal e-mail address is

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 . Good Luck Poppy