[Gruncle]

Newly diagnosed 10 days ago - frightened and confused

by Gruncle on Tue Mar 25, 2014 11:42 pm

This is a bit overwhelming to say the least!

After a bone narrow biopsy showed plasma cells comprising 80% of my marrow along with high protein levels, anemia, and on and on, I was ordered to have a skeletal survey done. That showed some "lucency" (lesion development) on certain bones), so now I need a PET scan to clarify results.

My doctor guardedly stated that I was at Stage III, but that the x-rays and a PET scan would assist in verification of staging. He then suggested I start treatment ASAP in preparation for a marrow transplant.

Too much to process at one time!?

Has anyone here NOT agreed to treatment? What are the pros and cons ... to treat or not to treat?

I feel perfectly healthy right now, well, except my mental state

[Cheryl G]

Re: Newly diagnosed 10 days ago - frightened and confused

by Cheryl G on Wed Mar 26, 2014 7:57 am

I know what you mean about all of this being overwhelming, Doug. There's a lot to learn when you're diagnosed with myeloma. Fortunately, one of the main reasons that there is a lot to learn is that there are more and more treatment options for the disease.

A couple of suggestions ...

First, if you haven't done it already, please try to make arrangements to see a myeloma specialist. So far, you've probably been seen by a general oncologist or hematologist-oncologist. Although these physicians certainly mean well and may be very knowledgeable, the reality is that they probably don't see or treat many myeloma patients in any given year.

Given how quickly things are changing in the field of myeloma, you want to be seen by a specialist who focuses on myeloma and knows all about the latest developments in the field. Most major cancer centers, particularly university cancer centers, will have at least one myeloma specialist. Please see if you can make an appointment to see one soon and have your case reviewed by the specialist.

Second, you asked if anyone here has ever agreed NOT to be treated for their myeloma. I can't say that I remember that ever being the case, but there was this discussion on the subject a while ago that you may find helpful:

https://myelomabeacon.org/forum/palliative-treatment-from-the-onset-t1617.html

Personally, I hope you will decide to be treated, because the treatment options these days can be very effective. Yes, there are side effects, and some people experience more of them than others. In most cases, though, the "side effect" of untreated myeloma is relatively rapid disease progression to death.

Finally, if your physicians have not already arranged for it to be done, the cells from your bone marrow biopsy should be tested for chromosomal abnormalities that can be present in the cells of myeloma patients. These are as important, if not more important, than the patient's "stage" at diagnosis in giving a sense of how aggressive the patient's disease is, and the results often play an important role in treatment decisions.

Best of luck to you, and please keep us posted on what you find out and don't hesitate to ask more questions.

[Multibilly]

Re: Newly diagnosed 10 days ago - frightened and confused

by Multibilly on Wed Mar 26, 2014 8:37 am

Dear Gruncle,

Cheryl provided some good advice and guidance here.

Given your situation and assuming that your tests confirm that you are at some advanced stage of multiple myeloma, I think that you definitely want to seek some sort of treatment (80% plasma cell level involvement is quite significant and you clearly are symptomatic if you are anemic...the PET/CT scan will verify any bone involvement (the mocha-flavored PET/CT radioactive tracer is the best ) You should also be looking at your kidney function and calcium levels).

The question in my mind would be what sort of drug regiment you would seek and whether you would consider a stem cell transplant or not? There are many drug combinations that are available to you and it is best to be working with a top notch multiple myeloma specialist, as Cheryl says. Any chromosome abnormalities you have may have will also impact the choice of drugs.

Please bear in mind that the side effects from these new multiple myeloma drugs are NOT like what you may picture for typical cancer treatment (endless nausea, extreme weight loss, complete hair loss, etc).

As far as stem cell transplants are concerned, you will find that folks on this forum have a wide variety of opinions on whether one should utilize them or not. Folks on this site can point you to those various threads.

Please do your homework, seek out a specialist (and get a second opinion from another multiple myeloma specialist as well) and take heart that the recent generation of drugs really do work quite well.

Best of luck to you.

[MattSchtick]

Re: Newly diagnosed 10 days ago - frightened and confused

by MattSchtick on Wed Mar 26, 2014 10:27 am

Gruncle you are about a fortnight behind me on this nightmare. I am still learning the terminology, Googling everything I can find about this condition, and still with my head in a complete whirlwind of emotions and confusion.

I saw my hematologist again this morning as I am now in my 2nd week of induction therapy on cyclophosphamide / Velcade / dex, and already my red cells are up 10% and, to be honest, I'm not feeling too bad. Tomorrow I go for my flu shots because I absolutely must not catch any sort of infection.

I apparently have a very aggressive form of myeloma and the hospital is trying everything to bring my ASCT forward to the earliest date possible, which might be June.

Just the word 'aggressive' freaked me out, yet the doctor seemed to put a positive spin on it with talk of aggressive types often responding well and diminishing fast. Bulldust, who knows? He was honest enough to admit that keeping it monitored and under control once it has diminished could be a challenge and is going to cause my lifestyle some serious disruption.

Everyone's journey seems to be different with this complex crazy ailment. I consider it as having a new hobby finding out everything I can about this so that I can make informed decisions, ask pertinent questions, and give myself what I consider to be the best chance of long term survival.

Just don't let 20 year old prognosis statistics grind you down, things have come a long way since then.

Good luck mate, keep us posted on your personal journey.

Andy

[DallasGG]

Re: Newly diagnosed 10 days ago - frightened and confused

by DallasGG on Wed Mar 26, 2014 11:05 am

Gruncle, I was diagnosed last June (2013) and like you I had 80% involvement in my bone marrow. I also had a fairly high m-spike (4.1) with slight anemia. I was diagnosed as a result of a routine yearly physical exam and hadn't expected anything but normal physical exam results.

Looking back, I had been having more headaches than normal, but, other than that, there weren't many other signs I might have multiple myeloma.

I started 20 weeks of VRD treatment (Velcade, Revlimid and dexamethasone) shortly after I was diagnosed and within 12 weeks the M-spike in my blood was non detectable. I decided to have a stem cell transplant in Feb 2014 and, shortly before that, I had a second bone marrow biopsy and the results showed 0% bone marrow involvement.

In other words I was in complete remission.

I went ahead with the transplant and am now about 7 weeks post transplant and doing very well. I'm still in complete remission and feeling very good. I've actually been able to go on my pre transplant bike rides of 15 miles in the last week.

I had a few side effects from the VRD treatment, but nothing that stopped me from living a fairly normal life. The stem cell transplant was no fun and, while I had a few of the expected side effects while in the hospital (nausea, diarrhea, loss of appetite), I recovered quickly from it. At this point, I'm glad I had the treatments and transplant.

I guess the point of my story is that, like you, I was diagnosed with multiple myeloma with numbers that didn't look good but, with the treatments that are available now, the response was very good.

Not everyone's journey with multiple myeloma is the same but, with the treatments that are available today, it is possible to have a good outcome. Not everyone decides to go ahead with the stem cell transplant and there are several threads here on that topic.

Good luck to you whatever route you take.

[Gruncle]

Re: Newly diagnosed 10 days ago - frightened and confused

by Gruncle on Wed Mar 26, 2014 1:28 pm

Thank you all for your encouragement and valuable insight. I plan on meeting with a renowned myeloma specialist at the University of California San Francisco Medical Center, as suggested by my hematologist / oncologist. Tomorrow I meet with a chemo specialist for a "ChemoTeach' session. I hope to find many answers there.

I'll continue to share on this forum and wish everyone the best of luck and health.

[Eric Hofacket]

Re: Newly diagnosed 10 days ago - frightened and confused

by Eric Hofacket on Thu Mar 27, 2014 12:34 pm

Gruncle,

I still remember how overwhelming those first weeks are after diagnosis. You had mentioned that you are feeling perfectly fine right now and are considering the option to treat or not to treat. I get that for some people who are older and already have a number of health problems that are adversely affecting their quality of life, it may make sense not to treat and let nature run its course. But this does not sound like your case. I am glad you are seeing a myeloma specialist at UCSF. It is my understanding they are one of the best myeloma centers in Northern California.

To help you firm up your decision to move forward with your decision to seek treatment, I would like to share my experience with you. I was feeling great too before I was diagnosed, other than a little back and rib pain that was giving me problems with swimming. It was getting painful to stretch my arm out to take a stroke. That is why I went into my GP doctor.

A look at my blood work from a surgery a month earlier lead to me being referred to a hematologist/oncologist a few days later and a bone marrow biopsy. I was still feeling pretty good at the first appointment with the oncologist, and we made an appointment two weeks later to go over the results.

Two days after that appointment I started having excessive thirst and going to the bathroom a lot. I could not seem to drink enough water. My oncologist told me to get to the ER ASAP without saying why. Turns out I had myeloma and was in kidney failure from really high calcium levels.

The back pain got really bad, as well, and I had to use a wheel chair to get around. There was no guarantee that my kidneys would recover, but I was treated for the high calcium and myeloma and my kidneys recovered full function. The back pain went away in about a month. If my kidneys had not recovered I would be on dialysis the rest of my life, whatever that may be.

So I went from feeling just fine to barely able to walk and facing a lifetime of dialysis in just a few days. Feeling good can be deceiving. I have known people who have pursued alternative medicine cures who were deceived into thinking they were working because they were feeling fine until things changed very quickly for them as well.

I am not trying to be grim, but if you do not treat you will eventually die from myeloma. I only asked my doctor once how people from myeloma die. The excessive number of plasma cells will crowd out the healthy bone marrow that makes white blood cells, red blood cells, and platelets. This will cause the levels of those blood cells to drop causing a number of complications.

It seems the way most people die from myeloma is when the immune system becomes so weakened they acquire infections that they cannot fight, often pneumonia, and go into cardiac arrest from lack of oxygen. If the red blood cell counts get to low then the heart does not get enough oxygen and can go into cardiac arrest. Less common is bleeding to death from low blood platelets.

Sometimes the excessive myeloma proteins build up on or in internal organs and people die from complications of general organ failure. Myeloma also eats away at the bones resulting in multiple bone fractures and breaks, especially in the spine, that cause significant pain and loss of mobility before any of the above occur.

In the years I have been reading the Beacon I have seen a lot of people talk about the complications and side effects of myeloma treatments, of which there are many and they can be difficult at times. But I have not heard many people talk about what it is like to die from myeloma because most people going through this cannot, or do not, want to share that with others. I feel this can give the false impression that the treatments are worse than the disease.

Having said all that, you will find that, while myeloma is still considered to be an incurable disease, the progress made in treating myeloma in that last decade has led to significant remissions and quality of life for many of those treated. There is also a bit of variation in treatment approaches even among the best myeloma specialist and centers in the country.

Hopefully, UCSF will be able to help get your orientated with treatment options and decisions, but the Beacon is a good resource to do research into this area, and there are Beacon Medical Advisors who are some of the best myeloma specialist in the field who answer questions posted about treatment options.

[Gruncle]

Re: Newly diagnosed 10 days ago - frightened and confused

by Gruncle on Fri Mar 28, 2014 12:42 pm

Hello Eric,

Thank you for your refreshing directness with regards to the "inevitable". This is a subject most often avoided by the younger generation, who are still feeling that immortality rooted in youthful spirit.

I have decided to go forward with my treatment. According to one member of my medical team, the UCSF myeloma specialists prefer to see a new patient shortly after beginning a course of treatment. My doctor agrees that I am not in immediate danger of facing any organ damage or other such issues, but maintains his conviction that I should start treatment within the next couple of weeks.

Until then I plan on taking a trip to Kauai for some spiritually uplifting R&R.

Live Long and Prosper!

Doug

[Multibilly]

Re: Newly diagnosed 10 days ago - frightened and confused

by Multibilly on Fri Mar 28, 2014 5:52 pm

Hi Gruncle,

I'm glad you are pursuing treatment, but I must say I have an issue with the comment "the UCSF myeloma specialists prefer to see a new patient shortly after beginning a course of treatment."

I can't think of a much more important item than getting the right guidance directly from a multiple myeloma specialist on one's frontline treatment protocol. Unless I am misunderstanding this statement, I find that kind of appointment philosophy at UCSF to be most arrogant. I would personally be looking at other institutions and specialists if the staff at a medical center told me this was their policy.

Am I misinterpreting your statement?

[Dr. Ken Shain]

Re: Newly diagnosed 10 days ago - frightened and confused

by Dr. Ken Shain on Fri Mar 28, 2014 7:33 pm

It is always overwhelming to hear the news that you have multiple myeloma, and you have come to the right forum to get great support and education from your peers and caregivers.

I would highly recommend therapy. We have a number of therapies that are well tolerated (although all with potential side effects). Depending on specific characteristics of your disease, you will be on two- or three-drug therapy. Without therapy, myeloma can be rapidly fatal.

It is scary now, but it will get into focus over time. You have a disease that is treatable -- it responds well to therapy and generally for long periods of time. I always recommend that every patient make every attempt to be seen by a myeloma expert.

Best of luck.