[PositiveChris]

Chris, 42, starting my journey

by PositiveChris on Tue Nov 29, 2016 3:54 am

Hi friends,

My name is Chris, and I was diagnosed today with multiple myeloma. Specifically, looks like the IgG type. This looks like a wonderful group, and I plan on sharing my ups and downs along the way.

My markers indicating multiple myeloma in my bloodwork today:

• High Immunoglobulin G: 3365 mg/dl
• Low Immunoglobulin A 60 mg/DL
• Confirmation of monoclonal IgG protein with lambda light chain specificity
• Serum lambda free light chain level: 277.56
• Serum kappa-lambda free light chain ratio: 0.02
• Classic M-spike
• (also many lesions from a PET scan today, although unconfirmed by a doc yet)

I've really been asking myself "Why" more than anything else.. Here's what I've come up with that could be contributing factors:

• Constant need to clear my throat. feeling like there's always phlegm.
• As a former crossfitter, I definitely got rhabdo a few times over the years
• I have been a heavy supplementer for about 10 years: multis, fish / krill oils, milk thistle, coQ10, resveratrol, just to scratch the surface. I was taking up to 60 pills a day at one point. (I'm off mostly everything now, will wait for the doc to advise me.)

A bit about my backstory. In January, 2016 I took a resolution to get back in shape. I had been around 190 pounds and hadn't worked out much despite having a full gym in my garage. I hit the weights and some light metcon workouts, and by March I was back up to my PRs in almost every lift. In April, I made a decision to stop dead-lifting heavy after two incidents where I felt a tweak in my back.

We went to Europe in April, and when we got back I had some nasty chest pain. I thought it was caused by being on the road, working at strange desks without great posture, etc. After a few weeks, went to the doctor and got diagnosed with costochondritis. That seemed consistent with everything I read, so I went with it. The pain didn't really go away, though. I've had neck pain all my life, and that was starting to bother me too.

Started seeing a chiropractor in May, and we started with a chest x-ray. Doc commented on all of the calcium in there, but said it was normal. The only thing of note really was a mild scoliosis, which I've known about for years. (I broke my femur when I was 3 and injured the other one at the same time). On about the 4th visit my back really hurt badly on an adjustment (which I'd later learn was my T12 vertebra). On the 5th visit, same thing, but worse. I just couldn't take it anymore and stopped.

I went in July to see a doctor for my chest pain, and to have him look at a lump that my wife noticed on my sternum.. I wasn't really convinced it was a lump. The doc sent me for a chest X-Ray, but said that I didn't have anything to worry about other than the mild scoliosis..

So back to the drawing board. I went in for a physical in August. Blood work came back great. (I've always had immaculate basic blood work) Got referred to a Gastrointrologist for my throat clearing issue which I thought was causing the Costrochondritis, which sent me on a path to an endoscopy showing all negative for anything but some light reflux.

I hurt my back again playing golf on my birthday in Hawaii. I was actually starting to feel ok, but it took the salt out of me. I was barely able to enjoy the family vacation with my parents.

After I got back, the back was just awful, but my chest was feeling great. That lasted for about 2 weeks, and I finally went back to the doc, who referred me to a surgeon to take a look at my chest lump, which had gotten a bit bigger. Primary doc thought it might be a lipoma, since I have had a lipoma removed from my back, and have a family history of them. The surgeon wasn't so sure, and he recommended an MRI, which got rescheduled to November 18, leaving me in pain the whole time. During this time, I developed a slight limp on my left side..

Something I learned about myself in the MRI room. I'm claustrophobic. I lasted literally about 10 seconds in there and had them take me out. F- that, I said. I asked the doc to refer me for a CT scan instead, but by then my back was so bad as was my leg that I went back to my primary doc..

Primary doc prescribed an x-ray which showed a lytic lesion on my T12. I got the news the day before Thanksgiving, and my (awesome by the way) primary doc called me and told me to get my butt down to the clinic for more blood work. He also sent a referral for me to do a full body PET/CT (which happened today). The note said "Please evaluate for primary malignancy," so I kind of figured something was wrong. Over that long weekend, I just went on some easy bike rides and did a lot of cancer googling. I did NOT chicken out on the CT, thank goodness.

On the ride to the CT, the doc called me to tell me that my bloodwork showed signs of multiple myeloma. I decided right there to be strong. My wife was in the car with me, and I explained what I knew to her. I was thankful that it wasn't something worse.

I waited around for the images to be burned on CD, and at home while finally figuring out how to read the PET and looking at my lesions (chest, spine, femur - on that left side, ribs, kidneys, clavicle, some around the mouth, shoulder – I also developed bad shoulder pain during the Hawaii vacation, and around my jaw). I got a call form the surgeon. The radiologist called him and expressed concern about the T12 and the possibility of collapse. Thank goodness, the surgeon is going to try to get me in with the hematologist earlier than my December 14 appoint­ment because of this.

So that's where I'm at right now. Waiting. I'm sure I'm going to have to do some blood work to­morrow, and I'm going to likely announce to people that I work with, many of whom are won­der­ing where the heck I am. I'll also begin calling friends, which I've also done a bit tonight. Patiently, positively, waiting. I'm really blessed to have the best wife ever, who has gone all out for me during my ordeal.

I'll keep you posted. I love all of you, thank you!

[Multibilly]

Re: Chris, 42, starting my journey

by Multibilly on Tue Nov 29, 2016 8:23 am

Hi Chris,

Welcome to the forum. That sounds like quite the journey to your current situation. From everything you've described it does sound like you have symptomatic multiple myeloma that will require treatment.

My only advice at this point is to seek out a myeloma specialist before embarking on a treatment plan. I say this because not all oncologist / hematologists are created equal when it comes to myeloma. You really want a hematologist that specializes in myeloma and who lives and breathes this disease on a daily basis and is on top of the daily research breakthroughs. If you let us know what city you are in, folks on this site can make some recommendations.

Good luck.

[PositiveChris]

Re: Chris, 42, starting my journey

by PositiveChris on Tue Nov 29, 2016 12:35 pm

Hi Multibilly!

Thank you for the great advice. I will absolutely do that. I am in the Bay Area in California. Right now, the hematologist I'm scheduled to see is at Stanford.

Much Love

[Multibilly]

Re: Chris, 42, starting my journey

by Multibilly on Tue Nov 29, 2016 2:08 pm

Stanford is a first rate place for multiple myeloma care and several folks on this forum go there. If you ever feel like you want to get a second opinion elsewhere (which I think is always a good idea), UCSF has some premier myeloma specialists as well. Let us know how things turn out.

[rick]

Re: Chris, 42, starting my journey

by rick on Tue Nov 29, 2016 9:33 pm

Hi Chris.

My husband is almost exactly one year ahead of you in our myeloma journey. He too was athletic and started his journey with back and then rib and sternal pain.

He has responded very well to his treatment and an autologous stem cell transplant in June and is now getting maintenance therapy. He had a complete response and is minimal residual disease (MRD) negative at this time (meaning he has no cancer cells down to measurable levels of 1:100,000 cells on specialty testing).

He had his first CT PET scan last year on the Friday after Thanksgiving, a week after his bone scan, and while his bone marrow biopsy was pending. it came back the first week in December. Eeven now, only a year later, so much of his / our journey seems a blur, but you need to know it got better for him / us, and I expect it will for you / your wife also.

We also saw a hematologist-oncologist at Standard University Hospital as well as at UCSF. We liked the teams at both centers, but live in San Francisco, so selected UCSF.

So much of your longer term plan will be related to the cytogenetics on your bone marrow biopsy, but you will likely be recommended for induction with triplet therapy by either center - with either Velcade, Revlimid, and dexamethasone (VRD) or Kyprolis, Revlimid, and dexa­metha­sone (KRD) - plus Zometa for bone stabili­za­tion.

You might ask your PCP to vaccinate you wth the PCV-13 and for flu and to consider other booster vaccines ahead of chemo.

We also got a baseline DEXA secan, pulmonary function tests, and an echo cardiogram in advance of chemo, but more to set the stage for trials if needed.

Wishing you the best.

rick

[PositiveChris]

Re: Chris, 42, starting my journey

by PositiveChris on Wed Nov 30, 2016 12:04 am

Thanks Rick,

That's super encouraging, and means a lot to me.

My hematologist appointment and bone marrow biopsy are scheduled for this Thursday, December 1 (I got bumped up).

Much love.

[countrygirl]

Re: Chris, 42, starting my journey

by countrygirl on Thu Dec 01, 2016 5:38 pm

Sorry for all your going through, it's harder to swallow at such a young age. I pray everything goes well for you. Keep us updated!

[PositiveChris]

Re: Chris, 42, starting my journey

by PositiveChris on Fri Dec 02, 2016 12:41 am

Hi friends,

Long day in the hospital today.

I've been waking up with a heart rate that ranges from 75 up to 100. It's been on the high end most of the time. I think this may be anxiety related. It also may be due to the fact that I started on a ketogenic diet last week. I'm not as hungry as I'd like to be, but that's probably a good thing for the transfer to ketosis.

Anyway, the day at the hospital started by taking some blood, then talking to the doctors, who confirmed the diagnosis based on the PET scan readings. Lots of lesions, with a particularly nasty one on my chest, and subcutaneous lesions above my sternum and right on my clavicle.

The doctor told me that I'm likely high risk due to the aggressiveness and my age (to be con­firmed by the bone marrow biopsy), and recommended we get going ASAP with treatment once we have the results.

They also sent another doctor in to biopsy the subcutaneous nodule on my chest, and she confirmed after looking at the microscope that it looked like it was also multiple myeloma.

He prescribed a full-body MRI (which I'm really anxious about, hate being in that machine), which will be scheduled in the next week. They're making sure that my T12 and my leg (and other lesions) are healthy enough, or need to be operated on or radiated, prior to starting chemo. He prescribed dexamethasone 40g weekly, which I started tonight.

After that was the bone marrow biopsy. It was surprisingly the most relaxing part of the day, and not painful at all.

So my next appointment is December 8, which will include blood work, a consult, and likely the first round of induction, which is likely to be Revlimid, Velcade, and dexamethasone (RVD), he said (but pending the bone marrow DNA results).

I'm uneasy about my multiple myeloma coming back as high risk. I didn't get to see all the bloodwork from today, but saw that my total blood protein went from 8.7 to 11 (last blood test was on November 30, 2016), Eagerly awaiting the beta2 microglobulin and the new protein levels and M-spike.

Forgot to mention last time, my M-spike on November 30, 2016 was 2.5 g/dl (25 g/l).

Staying positive, but really anxious and scared. I'm lucky to have my mom here, who flew out yesterday. My wife, as always, is amazing. My friends and coworkers have been pouring in well wishes. I'm blessed in many ways.

Much Love

[rick]

Re: Chris, 42, starting my journey

by rick on Fri Dec 02, 2016 2:30 am

Hi again Chris.

Glad this is all moving quickly.

A few thoughts.

First, "high risk" is a relative phrase with both historically poor outcomes BUT ALSO potentially newer good responses. The paradox in cancer is that aggressive cancers running wild can respond much better to treatment than tumors that are plodding along. My husband is 4:14 translocation which used to be worrisome (and still considered higher risk), but appears to be very sensitive to Velcade and Kyprolis and it has been very successful for him. We have a friend who started treatment after us who had "regular risk" disease that did not respond to first line therapy.

You are unique as is your myeloma. Others' treatment choices and results are roadmaps and recipes that you will need to learn from, but may choose to deviate from.

Second, the ketogenic diet can't hurt BUT I wouldn't worry about sugar on your days that you get your treatment injections. Chemotherapy works on dividing growing cells. Sugar promotes tumor growth. We use low sugar diet at baseline but have chosen to let the sugar / fruit flow during treatment injection days hoping to promote a better treatment response. A few other "good things" like a lot of vitamin C and green tea need to be avoided during treatment injection days as you WANT oxidation and not antioxidants.

Third, the dexamethasone will make anxiety worse and your heart might race. Sleep may be difficult. My husband uses lorazepam (Ativan) on "dex days". Mindfulness and guided imagery via the Internet has helped both of us.

i know the waiting for info is maddening at this stage (it always is), but you WILL get through this.

Sending positive thoughts.

rick

[Darci]

Re: Chris, 42, starting my journey

by Darci on Fri Dec 02, 2016 2:47 am

Chris,

Wow! You are so recently diagnosed and yet so informed. You didn't have a denial stage?! Your ability to face this illness (thank you for telling us how you are dealing with it) can only help you as you go forward – hopefully right into remission.

I just found the Beacon and yours was the first story (and only one, so far) that I have read. My husband was diagnosed in September. Like you, he's young for this disease and his case is aggressive. And like you, his cancer seemed to come out of nowhere. When we were in Europe in July, he lifted luggage into a cab and had a severe incident of back pain. And he never even mentioned it! Back at home (and just weeks later) he complained of fatigue he couldn't shake off. He got worse and worse - ashen gray with anemia. He moved from the bed to the sofa and that's about all he did for weeks. Tests were slow in being ordered and even slower to be interpreted.

To sum up this saga, he was finally admitted to intensive care and received 12 units of blood over five days in the hospital. He was in kidney failure at this point too. I'm guessing that not many people almost die on the day they get a cancer diagnosis, but with a >3 hemoglobin my husband came close.

Now he's home, and doing pretty well on the rather toxic Revlimid, Velcade, and dexamethasone (RVD) combination of drugs - though the side effects are intense and I feel like he's not at all the person I married 25 years ago.

Anyway, we are just becoming calm enough to tell people what's going on. Work and family - they had to be told right away. Next week, my annual holiday letter will be sent out. This letter deviates somewhat from my natural sarcastic humor to chronicle the health crisis we are facing.

I look forward to reading your future posts, Chris. Know that telling your experience helps those of us who are clueless navigate some swampy waters. Thank you - and be well, Chris!