[Health] The good news is that you're not paralyzed...

[EvilHomer3k]

That's good news, DD. You seem to be taking all of this very well. Best of luck with the treatment.

[MHS]

Good update, thanks!

[DD*]

So, happy 4th of July and I'm home from round 2 in the hospital. To refresh, I was in last weekend from the severe pain in my right hip. The radiologist and oncologist believe this is related to the mass/lesions in my sacral lumbar. In turn, they modified the treatment plan. Originally they intended to limit radiation to L1 in order to preserve the bone marrow in my hip bones; that is no longer an option. Consequently, I went in for radiation#1 on Wedensday but never left and was admitted via ER due to severe pain in my right hip. My radiation oncologist decided to up the radiation regime and additionally target the sacral area (continuing treatment on L1). Oncology would be dealing with pain mgt via inpatient - another four rounds of heavy steroids (now 40mg, up from 20mg / day), slow release pain patch (50mg vs 25mg - phentenol?), diplotyl (sp? 2mg injection as needed). Plus a muscle relaxant as needed.

Mostly they bumped the stuff I was on while ramping up and targeting addl areas with the radiation. Seems to have worked as I'm home today and in good shape, but that could be said at this time last week as well, so.... Talk to me in two days. The X factor is the added radiation treatment which both docs seem to think will be effective. Im also seeing good reaction from my body otherwise - solid appetite, no GI issues (i.e. I can have good bowel movements, and that is really nice!), etc. Down 40 lbs to an even 200 lbs which also helps.

Moving forward, I will pick up radiation again tomorrow - no treatment for you on weekends or holidays! - and the plan is 8-10 sessions with tomorrow being number 4. Continue higher dose pain/steroid treatment. Monitor pain mgt. Begin targeted drug therapy post-radiation (next week). There is also a possible trial drug that may be applicable and I will be talking to them about that this week. Oncology guys did say that getting an effective pain mgt program is usually the first speed bump and that is definitely my experience. Not fun bouncing from ER to home and back.

I was kind of surprised to find that there is no way they monitor the effectiveness of the treatment other than "how do you feel?" - I kind of assumed that they measured the mass or did something to say hey we zapped it for 3 days and it is 13% smaller but I guess not. I might be missing something here as I was not at my best at the time .

Another plus was that I finally had a chance to sit down and clear the air with my kids (14, 11) so they are completely in the loop. This has been something of a challenge logistically with divorce, kids sports, etc. Everyone (my ex, her mom, my parents) were worried about me handling it but apparently I nailed it - in my defense I've had a fair amount of time to think about it .

Thanks again for all the good karma!!

[KKBlue]

Thank you for taking the time to write. Remember you can ask again to gain a better understanding of how the situation is monitored. Hell, sure there are pamphlets they have to hand out too! You have had a lot going on the past few weeks, not sure how you are suppose to get it all straight!

Something I've learned second hand is to keep on talking to the technicians and monitoring your skin's reaction with the radiation. Make sure your team is understanding the directions for the procedure. Please double check regarding communication between the doctor and staff for crystal clarity for all parties concerned, including yourself.

Keep on pooping with ease

[Blackhawk]

I was kind of surprised to find that there is no way they monitor the effectiveness of the treatment other than "how do you feel?" - I kind of assumed that they measured the mass or did something to say hey we zapped it for 3 days and it is 13% smaller but I guess not. I might be missing something here as I was not at my best at the time .

They might have to repeat the scans to do that, which would be expensive and involve unnecessary doses of additional radiation. They likely will check it, but not every time.

[Daehawk]

If you find the lack of help with your pain management or you just dont like them dont be afraid to switch to another. I had one try to take me off meds to give me ineffectual shots in my back just so they could charge hundreds and hundreds of dollars to Medicare. I found one who actually treated me with the meds that have always worked for me. Its no joke that pain management is a shit hole filled with uncaring asses who are not trained for this. They are in it to make money and thats all they care about. So look until you find one who actually cares and knows how to treat a chronic pain patient and not a temporary thing who says take some Advil and some herbal supplements.

[DD*]

First full week of chemo done. Side effects were mild and I'm now off on round 2. So far so good - thanks for the support!

Still kicking and not much to report, but no news is good news. They will take blood next week, I think, and I should have a better idea if we're seeing any effect at that point (with the understanding that it is still early).

[cheeba]

Best wishes for continued mild side effects and what will surely lead to a full recovery!

[DD*]

So, an update. I think I've been in somewhat of a state of denial, in that I've not really squared up to what is going on and the implications. I've been more treating this as a "normal" health issue but this weekend I did a lot of reading and it was not a pleasant round of soul searching, especially when you really consider what "incurable" means.

This was the happy thought that popped into my head this weekend:

Spoiler:

I figured out that, if the median survival estimates were close to accurate (and that is hard to gauge), I really don't need to worry too much about my crappy retirement planning. That was something that had been eating at me for several years, but likely will not be an issue now. Small favors, I guess.

Anyway, I did have some good news. The oncologist has been trying to get the lab to run a "light chain analysis" (LCA) on my blood for a while. For whatever reason, they were not doing it, so he apparently chewed their ass last week. The end result is that they ran the test and he was able to give me the results late last week. LCA count prior to chemo was over 200; now just over halfway through, it is 14. This is good news, though I don't have all of the necessary context to see just how good - is the target zero? Is 14 livable? That sort of thing.

As of now, "the plan" is to complete the drug treatment then do the stem cell nuke your immune system process. From my weekend reading, this was (and is) a common way to treat MM, though some of the articles I read posed the question as to whether it should still be the standard, or if the stem cell stuff could be put off for patients that responded well to just drug treatment. Lots of back and forth, but not much clarity. I have some add'l research and reading to do, and I think I'm going to get a 2nd opinion as well - I know what my doc thinks. I'm just leery of the "nuke it from orbit" option as it can lead to some pretty severe side effects.

Anyway, feeling good, the surgery is healing great, I'm pretty much off my pain meds and am walking without a walker during recreation time (still use it at work). Back to the office 2 days a week and I'm back announcing/DJing hockey games.

More to follow when I get updated info... thanks again for the support!!

[ImLawBoy]

SI think I'm going to get a 2nd opinion as well - I know what my doc thinks.

This is really important. Some people hesitate getting a second opinion because they don't want to alienate or upset their primary doctor, but if your doctor is one to get upset with you for getting a second opinion, you probably have the wrong doctor to begin with. We've received second opinions for my son in the past, and they've helped out - and his primary doctors have always appreciated it.

Good luck!

[stessier]

Glad to hear things are progressing decently well.

As for the median survival age - remember, stats are all about populations and you're an individual. Individual outliers occur all the time...which may not be what you want to hear based on the retirement issues, but still! Happy thoughts!

[Anonymous Bosch]

DD, if you do seek a second opinion, I would reiterate what I wrote earlier in the thread, and strongly encourage you to investigate immunotherapy/Darzalex.

From what little I know, ir's a far more preferable means of treatment for Mulitple Myeloma than the gruelling ordeal involved with a stem cell transplant.

[Blackhawk]

Glad to hear things are progressing decently well.

As for the median survival age - remember, stats are all about populations and you're an individual. Individual outliers occur all the time...which may not be what you want to hear based on the retirement issues, but still! Happy thoughts!

The other thing to remember about cancer survival rate stats is that they are five year survival rates, not end-of-treatment survival rates. That means that the newest, most current stats from a study that came out yesterday are already five years out of date. Not only that, but most of those stats you see aren't from studies released yesterday, but ones released sometime in the past several years.

That means that they show how people survived treatment up to a decade ago, not today. Cancer treatment is advancing fast enough that those years can make a huge difference.

My oncologist told me that, had I come in 20 years earlier, he would have just told me to say goodbye. Whatever the stats say, your odds are better.

[Paingod]

--Happy Stat Thoughts--

In short, better start thinking 401k again and talk to a good CPA.

[DD*]

--Happy Stat Thoughts--

In short, better start thinking 401k again and talk to a good CPA.

First world problems that I will gladly take, thank you very much!

[DD*]

DD, if you do seek a second opinion, I would reiterate what I wrote earlier in the thread, and strongly encourage you to investigate immunotherapy/Darzalex.

From what little I know, ir's a far more preferable means of treatment for Mulitple Myeloma than the gruelling ordeal involved with a stem cell transplant.

I did some digging, and it seems that the new immunotherapy drugs including Darzalex and similar, are only approved once the patient has gone through several (1-3) other treatment programs (presumably with limited results).

I have an appointment with my oncologist today to discuss my treatment plan for the next 6-12 months. I'm going to bring up immunotherapy as one of my questions.

More to follow...

[Xmann]

DD, if you do seek a second opinion, I would reiterate what I wrote earlier in the thread, and strongly encourage you to investigate immunotherapy/Darzalex.

From what little I know, ir's a far more preferable means of treatment for Mulitple Myeloma than the gruelling ordeal involved with a stem cell transplant.

I did some digging, and it seems that the new immunotherapy drugs including Darzalex and similar, are only approved once the patient has gone through several (1-3) other treatment programs (presumably with limited results).

I have an appointment with my oncologist today to discuss my treatment plan for the next 6-12 months. I'm going to bring up immunotherapy as one of my questions.

More to follow...

When I administered chemo, they used immunotherapy as "experimental" treatments and lots of patients didn't even have to pay for treatment.

They termed it "experimental" so you didn't have to go through the failed treatments first.

Definitely something to ask and push for. I'm all for immunotherapy as well. Stem cell can be brutal.

[DD*]

So it has been a while since I've provided an update...

I've been going through chemo and am now on my 6th "cycle." The program consists of a daily oral anti-cancer drug (Revlimid), a dose of steroids once per week, a shot "in mah belly" once a week (I forget exactly what this drug is and what it is for) and an infusion (IV) once a month of a bone-strengthening drug.

I've been fortunate that I've had minimal side effects from the chemo. All of my blood work as been coming back perfect throughout the whole process.

As noted earlier, one of the ways they diagnose and track the progress of myeloma is measuring the ration of free light chains within your immunoglobulins, specifically the ratio between the kappa and lamda chains. In a normal person (ie one with no cancer) it should be about 1:1 or '1'. They've been measuring my results since my diagnosis in late May / early June:

• 6/1 - 284.34
• 9/19 - 18.44
• 11/11 - 15.00
• 12/9 - 6.33
• 12/20 - 2.31

So, pretty good response from the chemo!

The next step is the stem cell transplant. After talking to a number of different people including other patients, oncologists, etc., I've decided to go ahead with the transplant procedure. It was not an easy decision but at the end of the day, I felt I had to do everything I could to address the cancer, and the benefits outweighed the risk. There was a lot that went into this - if you're really interested, PM me.

As part of the whole work-up to the transplant, I had to do a TON of lab tests. Protein Electrophoresis analysis, comprehensive metabolic panel (twice), free light chain analysis, 24 hour urine collection and analysis (to make sure my liver was working correctly), 2D transthoracic echo analysis (with doppler!), complete blood count, bone marrow biopsy (where they insert a probe into your bone - hip in my case - cut a sample out and for good measure extract a liquid sample from inside the bone marrow - every bit as much fun as it sounds like), EKG, long bone metastatic survey, chest and lateral survey, etc etc...

I met with one of my oncologists today to review the test results (believe it or not, most of the results are not written in English). After he had gone through them, we talked about the "CRAB" symptoms - Calcium, Renal, Anemia, Bone lesions. In every one, I've either improved or stayed the same. My pain is significantly down and I'm working off pain meds altogether. My FCA is just about normal. All my blood work is essentially perfect. My neurological symptoms (numbness and tingling in my left leg) are just about gone.

So, taken together, the word is that I'm officially in REMISSION.

FUCK YOU CANCER!

Thanks for the support - I didn't realize how stressed I was until I walked out of the doctors office and started bawling like a baby. Guess I was a bit more wound up and worried than I had even let on to myself.

On to the next step of the fight!

[Isgrimnur]

[Zaxxon]

Congrats! That's fantastic news.

[Jeff V]

Congrats, but please stay on top of things, always. "Gone" is not always a permanent state, as a close friend can attest.

[Xmann]

So it has been a while since I've provided an update...

I've been going through chemo and am now on my 6th "cycle." The program consists of a daily oral anti-cancer drug (Revlimid), a dose of steroids once per week, a shot "in mah belly" once a week (I forget exactly what this drug is and what it is for) and an infusion (IV) once a month of a bone-strengthening drug.

I've been fortunate that I've had minimal side effects from the chemo. All of my blood work as been coming back perfect throughout the whole process.

As noted earlier, one of the ways they diagnose and track the progress of myeloma is measuring the ration of free light chains within your immunoglobulins, specifically the ratio between the kappa and lamda chains. In a normal person (ie one with no cancer) it should be about 1:1 or '1'. They've been measuring my results since my diagnosis in late May / early June:

• 6/1 - 284.34
• 9/19 - 18.44
• 11/11 - 15.00
• 12/9 - 6.33
• 12/20 - 2.31

So, pretty good response from the chemo!

The next step is the stem cell transplant. After talking to a number of different people including other patients, oncologists, etc., I've decided to go ahead with the transplant procedure. It was not an easy decision but at the end of the day, I felt I had to do everything I could to address the cancer, and the benefits outweighed the risk. There was a lot that went into this - if you're really interested, PM me.

As part of the whole work-up to the transplant, I had to do a TON of lab tests. Protein Electrophoresis analysis, comprehensive metabolic panel (twice), free light chain analysis, 24 hour urine collection and analysis (to make sure my liver was working correctly), 2D transthoracic echo analysis (with doppler!), complete blood count, bone marrow biopsy (where they insert a probe into your bone - hip in my case - cut a sample out and for good measure extract a liquid sample from inside the bone marrow - every bit as much fun as it sounds like), EKG, long bone metastatic survey, chest and lateral survey, etc etc...

I met with one of my oncologists today to review the test results (believe it or not, most of the results are not written in English). After he had gone through them, we talked about the "CRAB" symptoms - Calcium, Renal, Anemia, Bone lesions. In every one, I've either improved or stayed the same. My pain is significantly down and I'm working off pain meds altogether. My FCA is just about normal. All my blood work is essentially perfect. My neurological symptoms (numbness and tingling in my left leg) are just about gone.

So, taken together, the word is that I'm officially in REMISSION.

FUCK YOU CANCER!

Thanks for the support - I didn't realize how stressed I was until I walked out of the doctors office and started bawling like a baby. Guess I was a bit more wound up and worried than I had even let on to myself.

On to the next step of the fight!

shots in your belly are to keep your white blood cells up. chemo destroys them and why you are at danger for illness while going through treatment....

Doesn't matter now!!!

Fuck cancer!!!

[Ralph-Wiggum]

[The Meal]

Fuck yeah!

[Anonymous Bosch]

Congratulations on the efficacy of your endeavours thus far DD, and best wishes for your stem cell procedure.

[Kraken]

[DD*]

So it has been a while since I've provided an update...

I've been going through chemo and am now on my 6th "cycle." The program consists of a daily oral anti-cancer drug (Revlimid), a dose of steroids once per week, a shot "in mah belly" once a week (I forget exactly what this drug is and what it is for) and an infusion (IV) once a month of a bone-strengthening drug.

I've been fortunate that I've had minimal side effects from the chemo. All of my blood work as been coming back perfect throughout the whole process.

As noted earlier, one of the ways they diagnose and track the progress of myeloma is measuring the ration of free light chains within your immunoglobulins, specifically the ratio between the kappa and lamda chains. In a normal person (ie one with no cancer) it should be about 1:1 or '1'. They've been measuring my results since my diagnosis in late May / early June:

• 6/1 - 284.34
• 9/19 - 18.44
• 11/11 - 15.00
• 12/9 - 6.33
• 12/20 - 2.31

So, pretty good response from the chemo!

The next step is the stem cell transplant. After talking to a number of different people including other patients, oncologists, etc., I've decided to go ahead with the transplant procedure. It was not an easy decision but at the end of the day, I felt I had to do everything I could to address the cancer, and the benefits outweighed the risk. There was a lot that went into this - if you're really interested, PM me.

As part of the whole work-up to the transplant, I had to do a TON of lab tests. Protein Electrophoresis analysis, comprehensive metabolic panel (twice), free light chain analysis, 24 hour urine collection and analysis (to make sure my liver was working correctly), 2D transthoracic echo analysis (with doppler!), complete blood count, bone marrow biopsy (where they insert a probe into your bone - hip in my case - cut a sample out and for good measure extract a liquid sample from inside the bone marrow - every bit as much fun as it sounds like), EKG, long bone metastatic survey, chest and lateral survey, etc etc...

I met with one of my oncologists today to review the test results (believe it or not, most of the results are not written in English). After he had gone through them, we talked about the "CRAB" symptoms - Calcium, Renal, Anemia, Bone lesions. In every one, I've either improved or stayed the same. My pain is significantly down and I'm working off pain meds altogether. My FCA is just about normal. All my blood work is essentially perfect. My neurological symptoms (numbness and tingling in my left leg) are just about gone.

So, taken together, the word is that I'm officially in REMISSION.

FUCK YOU CANCER!

Thanks for the support - I didn't realize how stressed I was until I walked out of the doctors office and started bawling like a baby. Guess I was a bit more wound up and worried than I had even let on to myself.

On to the next step of the fight!

shots in your belly are to keep your white blood cells up. chemo destroys them and why you are at danger for illness while going through treatment....

Doesn't matter now!!!

Fuck cancer!!!

That's right - I didn't have it in front of me and I tend to forget which med does what. I wonder if that qualifies me for senior citizen status

I believe my white cell count actually improved a bit, which the docs seemed pretty happy about.


Sent from my iPhone using Tapatalk

[Holman]

Awesome! Kick cancer hard!

[DD*]

So, I am currently in Karmanos Cancer Center as an inpatient. Stem cell xplant was last week (chemo bomb on Tuesday, reintroduction of my cells on Thursday). Docs all seem happy, so it appears things are going according to plan.

Feeling run down and sometimes nauseous (which is normal, I am told) and will be stuck here for another week or so.

All of the personnel here are very nice and professional, and I'm reminded daily that compared to some, I've got it pretty good. Trying to keep thinking happy thoughts!

I will note that the market exists for someone to make a fucking killing, if they can get hospital food services to work even reasonably well. It is truly amazing how "bacon, hash browns, OJ, and a bluebrerry muffin" is delivered as "oatmeal, a blueberry muffin, peaches, and a decaf coffee."

OTOH, I think this could be a defense mechanism. When the Overlords begin their expansion, we show them this operation - they will conclude we are simply not worth conquering...

[Zaxxon]

Glad to hear the transplant is done and successful!

[Zarathud]

Best wishes for a full recovery, DD.

I am pretty sure that if the food tastes too good, there's something wrong with you. Or you've snuck inside some contraband edibles. It's a trap!

[Daehawk]

Got no words. I dont know what to say except get well which Im sure you're trying to do anyways. At these times I feel small and useless in the world. Sounds like you are on a good path now. I wish you the best DD. Sorry I cannot do more.

[Kelric]

Glad to hear it, DD.

[Bakhtosh]

Keep kicking its butt DD

[DD*]

So it has been a while since I posted an update, though the folks that are on FB may have gotten some info - I'm not entirely certain who sees what on that platform. Anyway, this may be a bit wordy so I'll add a tl:dr at the end.

Back last summer, I started having some back pain, right in the middle of my back. Around the same time, I was also getting some sharp pain in my left hip. The back pain was off and on and seemed to be easily controlled with OTC painkillers when necessary. The left hip was really bothering me, and I saw my PCP about it. He made encouraging noises and put me on steroids for 10 days. Miracle drugs - I felt great, right up until the 10 days was over, then it was back to the ouchy. I finally made an appointment with the orthopedic surgeon that had done my initial spinal surgery almost 2 years ago (and that found the cancer in the first place) to see about both the hip and the back, which had grown increasingly painful.

While all of this was going on (we're into fall by now), my oncologist recommended that I go from maintenance on Revlimid (a lower dose of the chemo drug that initially knocked the cancer back) to "treatment" level chemo with a new set of drugs. My blood work indicated that the cancer was still present (not in remission) and it looked like it might be trying to make a comeback. So, his office started to organize the approvals and whatnot to get me on a new drug (Pomalyst) with regular infusions of a second drug whose name escapes at the moment. This is the standard treatment, a bit of a drug cocktail similar to what I went through the first time.

Queue September - back is pretty uncomfortable. Ortho doc sends me for complete back MRI (2 hours in the MRI machine - yay!). They find an abnormal mass around my T7 vertebrae - given my history, it is almost certainly a cancerous tumor. Fortunately, it is not impacting the spine at all, and between the ortho guy and the oncologist, the plan is treat the cancer systemically with the new chemo with the idea that this should address all of the cancer indicators showing up (in addition to the tumor, there were some other areas that looked a little funky). In the meantime, do pain management with prescription painkillers as needed.

Get through the holidays and the whole "new chemo" scheme is taking a long time to come together between the oncologist's office and my insurance. Huge pain in the ass where you can do literally nothing but wait, so that is what I did.

Finally get started on chemo - the regime is 3 weeks on, one week off. Got through week one. Back is still bothering me but manageable (barely). Tuesday March 6, I'm driving home from work. Hit a bump and get what I can only describe as an electric shock down both of my legs - they literally jerked up off the pedals in the car. Find if I do certain things, I can replicate the issue. "This is not good." Trying to hold out to see if the chemo starts to do its thing...

...but such would not be. By Thursday I had started to lose all feeling and control of my right leg. By Sunday night I literally could not walk and could barely stand. 100% loss of function in the right leg, probably 30-40% in the left. We called the ambulance to haul me to the hospital where they put me up in ER and called my ortho doc. He ordered an MRI to see WTF was going on. Had to wait all day on Monday to get into the MRI room - finally got in around 6(?) Monday night and the doc got the results first thing Tuesday morning. He immediately started pulling strings to get me into the OR stat - as he put it, "I'd have you on the table in 20 minutes if I could."

Took a bit longer than that, but at the end of the day I was in surgery for 6+ hours. They removed a walnut-sized tumor that was literally riding on my spinal column, and cut out a bunch of other cancerous material from the area around my back. The T7 vertebrae was essentially devoured by the tumor, so I now have a second laminectomy to bypass what is left of the T7 vertebrae, with accompanying screws, rods, and bone grafts. Matches the one I have at L1.

After surgery, I spent almost 3 weeks in the hospital learning to use my legs again - still not nearly 100% but I can walk (with a walker, though I'm working on weening myself off that), climb stairs, shower, etc. All good stuff. Still have some tingling / loss of sensation in various areas but all of the extremities and plumbing seems to be functioning appropriately and the smart folks think I will continue to see improvement though there is no way to tell how close to 100% I will get.

On the cancer side, I did a week's worth of radiation to kill anything remaining in my back after the surgery, and I'm now on the Pomalyst chemo program full time. There have been some side effects - it is knocking the hell out of my immune system, so they want me to stay away from crowds and especially sick people as my system is very compromised right now. But if it kills the cancer, small price to pay. They are trying to hold off on giving me yet another drug to boost the immune system as they want to see if I can recover on my own. Currently can't drive (well, not technically supposed to but if you thought you saw me at Chilis getting curbside pick up last night, I will vehemently deny it... ) and I have a follow-up with the ortho surgeon tomorrow to see how I'm healing from the actual surgery. I see the oncologist on a regular basis and my blood work is done weekly to gauge how the chemo is going, so I am hopeful there. All in all, happy to be vertical every day

tl:dr - DD has a second spine surgery to remove a tumor, cancer sucks but hopefully getting under control.

[stessier]

Holy cow! Glad to hear you're doing better!

[Isgrimnur]

Scary stuff. Keep plugging away and get better.

[Zaxxon]

Sorry to hear this but glad that things are trending in an upward direction!

[DD*]

Scary stuff. Keep plugging away and get better.

Yeah sitting in bed at 2:00 am wondering if you're going to be able to walk or if it is time to start shopping for handicap vans is a little off-putting. I imagine some of the other OOers with chronic health issues can relate to the way your brain likes to give you the worst case stuff in the middle of the night...

[stessier]

Scary stuff. Keep plugging away and get better.

Yeah sitting in bed at 2:00 am wondering if you're going to be able to walk or if it is time to start shopping for handicap vans is a little off-putting. I imagine some of the other OOers with chronic health issues can relate to the way your brain likes to give you the worst case stuff in the middle of the night...

I don't have medical issues, but I do have kids and totally agree with one's brain going haywire in the middle of the night (or early evening for me by most people's reckoning). When it happens to me, I either change rooms and try to get back to sleep, or just get up and play some games or something to change my mood.

Do you at have something to play with during all the hospital time?