[Sharon01]

Diagnosed at stage 2

by Sharon01 on Sun Nov 16, 2014 8:41 pm

Hello all,

I am just at the beginning of all that lies ahead. Am expecting my SCT [stem cell transplant] in January 15.

My first question is:

Were most people diagnosed at stage 1, 2, or 3 ? And if you have had a SCT, did it make any difference if you were at either stage,

I have been reading through the forums and thank you all for the information.

Please feel free to direct me to something you feel I should be aware of , as I don't even know what I don't know!! And I have asked friends to stop telling me things. They all have great intentions but if an organic carrot juice was going to cure me, or the guy down the road living up a tree eating a mung bean knew the answer, I am sure this site would have shared that by now

Cheers
Sharon

[Julie Phillips]

Re: Diagnosed at stage 2

by Julie Phillips on Sun Nov 16, 2014 9:01 pm

I was diagnosed February 15, 2013 and had a stem cell transplant July 15, 2013. I was stage 1 when I was diagnosed. Luckily, I am in complete remission and I do not take any maintenance medication. I have blood work every 3 months to see if I am still in remission. This Tuesday is my 3 month check and I am praying for good blood.

Good luck to you.

[Julie Phillips]

Re: Diagnosed at stage 2

by Julie Phillips on Sun Nov 16, 2014 9:04 pm

More info ... I was 49 years old when I was diagnosed. I had a back ache that would not go away and I pushed my doctor for more tests I was tired of hearing that I was getting close to 50, so that is why my back hurt. I am glad that I pushed the doctors.

[Mark K]

Re: Diagnosed at stage 2

by Mark K on Sun Nov 16, 2014 9:44 pm

I was 44 diagnosed at stage 3, pretty beat up, high calcium levels, fractured ribs, broken vertebrae from a chiropractor trying to fix my constantly sore back , kidneys failing, and I was barely able to walk . That was January 2012. I had my ASCT [autologous stem cell transplant] that June 2012 after 4 months of induction therapy (Velcade / dex).

Afterwards I did 4 months of Revlimid maintenance therapy. However, I developed a pulmonary embolism, so we stopped the Revlimid. I've been in remission and off all medications coming up on 2 years in December. I went back to work full time about 5 weeks after my ASCT and I live a pretty normal life. I can't run without some back discomfort, but I can hike, swim, and bike.

The ASCT was tough (nausea, weakness, fatigue), but I'd do it again if I had to. I was in a study where I had to chew on ice / snow cone for 6 hours after the chemo to prevent mouth sores. It worked well – I didn't develop any mouth sores – but I couldn't stand snow cones or ice for many months afterwards.

You'll lose your hair, who cares, as longs as they kill as much myeloma as possible and give you a deep remission . It will grow back!

Best of luck!

[Guitarnut]

Re: Diagnosed at stage 2

by Guitarnut on Mon Nov 17, 2014 2:19 am

Hi Sharon01,

I was diagnosed at 47 as stage 3 with multiple compression fractures in my spine and the beginning of kidney failure. I was in treatment with Velcade and dex for 8 months before my ASCT in June of 2012. I was declared to be in CR in March of 2013 and have remained there.

I couldn't help but get a chuckle from your comment about organic carrot juice and mung bean! You left out the coffee enemas! I know folks mean well, but I've heard all sorts of whacked out things from folks that know nothing about cancer and have never had it themselves. I'm with ya!

Don't get yourself too worked up. I know that's easier said than done but I've no doubt you will be very well taken care of during the process.

[mikeb]

Re: Diagnosed at stage 2

by mikeb on Mon Nov 17, 2014 10:46 am

Hi Sharon,

First of all, welcome to this community. Don't worry about not knowing what you don't know. We all started out that way; very few of us had ever heard of multiple myeloma before we were diagnosed with it. Even at this point in my myeloma journey, having had MGUS / smoldering myeloma / multiple myeloma since 2009, I often feel like I don't know what I don't know. There's so much to learn. But this site is a great place for information, so you've come to a good spot.

I'll just mention a few things in relation to your post. First, I think people in the myeloma community are coming to the conclusion that your "stage" matters less than some other factors for your prognosis. Chief among those other factors is the presence/absence of certain genetic abnormalities in myeloma cells found during your bone marrow biopsy. The FISH test is what is used most commonly to detect these abnormalities. Your treatment can be personalized to some extent based on what this test finds; see, for example:

"New Mayo (mSMART) guidelines for newly diagnosed myeloma", Beacon forum thread started March 27, 2014.

It sounds like you're already moving down the treatment path, but I'd like to emphasize the importance of being treated by a myeloma specialist, by which we mean someone who exclusively treats myeloma patients. Multiple myeloma is such a complex disease and advances are occurring so quickly that you want to be treated by someone who lives and breathes this stuff daily. That may already be the case for you, but I couldn't tell from your post.

Several people in the Beacon community have chronicled their stem cell transplant experiences, so reading those threads can help you get a better sense of what to expect. Two recent folks are Kim and MattSchtick / Andy.

Best wishes to you. Please keep us posted on how things are going.

Mike

[darnold]

Re: Diagnosed at stage 2

by darnold on Sat Nov 22, 2014 4:54 pm

Hi Sharon. I was 52 and stage 3 when I was diagnosed. I had been trying to find out why my ribs hurt, a journey that eventually led to my myeloma diagnosis. I went through induction therapy and a SCT, achieving complete remission. After two years, my myeloma became active again, but at such a low level, that I was considered pre-cancerous. At that point, I wasn't taking maintenance drugs, and we just watched it through quarterly blood work. After two more years, it became more active, so I've been getting treatment again.

Through all of this, I've been leading a relatively normal life. I work full time (although thank goodness for telework), take care of my house and yard, go walking and hiking, and go on vacations. I take my oncologist's advice and listen to my body, which means that I often give myself a Sabbath on the weekend or don't do as much in a day as I used to.

You learn to live with the uncertainty that each blood test can bring good news or not so good news. But mainly, you live, which is the most important thing any of us can share with you.

We're all here to share our stories and advice and experiences, so please feel free to ask. We've all learned from each other.

Dana A

[Leealli]

Re: Diagnosed at stage 2

by Leealli on Mon Dec 01, 2014 4:10 pm

My Mom was diagnosed as Stage 3 in July. She is 70. Her SCT will be next week. There is SO much information out there. After her 2nd round of chemo (RVD) was complete, we met with the transplant team. They kept coming in asking us "Do you have any questions?" But we didn't know what to ask.

After round 3, it was determined she was a good candidate and now - a month later - we have more information that we could have ever imagined. Manuals, pamphlets, binders, Powerpoint presentations, caregiver meetings, family meetings, social work meetings, tours of the unit, finance meetings - and - the all-present Internet. I am the information scavenger of the family. I write everything down then type it up so that my Mom can look at it later. Sometimes, she get overwhelmed. Websites like this, cancer connect, IMF, MMF... have all helped me get my brain around all the info.

All this is my way of saying - it will come. The info is there - your transplant team will give you lots of it and answer all of your questions.