[Average Joe]

Woe and Misery

by Average Joe on Mon Jul 16, 2012 6:25 pm

Is this site a completely skewed view of what a typical myeloma patient is? I ask because the majority of posts seem to be tales of wretched misery and woe, of nasty side effects that only get worse with time, of pains, lesions, aches, and exaccerbating symptoms (nausea, diahrrea, neuropathy, debilitating infections, you name it).

Some 20,000 peoplelare diagnosed with multiple myeloma per year in the U.S along - -and I am one -- meainng (I gesstimate) that there are probably more than 200,000 new multiple myeloma patients in industrialized nations world-wide each year, further meaning that there are probably more than a half million multiple myeloma patients living today.

Of these football stadium of people with a diagnosis of multiple myeloma - - a guesstimate -- how many are actually on this site - - several hundred or so? And would not most of these people be the outliers who largely are experiencing major medical issues.

Is the fact that I feel healthy, strong, and optimistic an anomaly or is it more the rule than the exception?

Just wondering.

[alaskanmeg]

Re: Woe and Misery

by alaskanmeg on Mon Jul 16, 2012 7:46 pm

Thank you Average Joe, well articulated!

[Canuck Bob]

Re: Woe and Misery

by Canuck Bob on Mon Jul 16, 2012 8:37 pm

I honestly relate my side effects but they are very mild. I worked throughout my diagnosis, chemo, ASCT, and Rev maintenance. I made sales calls from my ASCT bed day 2 and travelled deep into the Canadian bush on a sales call day 29 as soon as my blood numbers approached low normal.

I am happy I went through it all, and blessed with Canadian Health Care.

My family is closer than I could have imagined. I now understand what courage and perseverance really are.

I tell folks constantly that I'm the healthiest sick guy they know.

Many folks suffer immensely. I try and be honest about my luck and drug tolerance while being very sensitive to those who are much less fortunate. That may be why you hear less success stories as others share the worst stories. Those of us with success don't need support like those who need us during severe times.

I know sharing the incredible darkness and fear of telling my 7 and 9 year old Daddy had cancer on this forum carried me through my worst times.

To answer your question in my limited sampling of folks going through a large Transplant clinic specializing in myeloma I was the exception. The nurses reinforced that observation from longer experience. We are living longer and healthier lives generally from only a short time ago it seems. The first year or two of treatment can be a real bear for many.

[Nancy Shamanna]

Re: Woe and Misery

by Nancy Shamanna on Mon Jul 16, 2012 11:08 pm

Hi Everyone on this Thread......I can see where you are coming from if you are doing fairly well, and managing to cope with day to day life even while getting treated for myeloma. I have been able to manage most of the time also, although I must say that the 21 months of treatment, including an ASCT, were quite wearing. Now, in retrospect, I can see just what kind of stress I was under...fortunately now am well again. I thank all who helped me along this path, too numerous to even mention really. However, I have learned from being in a local support group, and also from the Beacon, that there are differing types of myeloma, some of which are much harder to treat than other types. Also, many people at diagnosis are in dire straights medically speaking. Those folks have more recovery to get thru than say someone who has recently progressed from MGUS. I realize now that although I thought I was in pretty rough shape at DX, there are many who had more health issues to contend with. So that's just my point of view. And we are right now indeed fortunate to be getting the latest drugs , 'novel agents'. i hope and pray that these new drugs will help us to survive the myeloma too! Am also very fortunate to have Canadian health care, as mentioned by Bob.

[Christa's Mom]

Re: Woe and Misery

by Christa's Mom on Tue Jul 17, 2012 12:22 pm

I agree with Nancy -- myeloma affects everyone differently. While most do quite well with treatment, some do not. Like you, Joe, EJ has done very well with his treatment, and his life is pretty much what it was before his diagnosis. But I am not naive enough to believe that life will always be this good. I suspect the troubles with drugs, the bone pain, the infections, etc. will be part of our future at some point in the (hopefully) distant future.

I appreciate hearing what others have to say because it helps me prepare. Because of people on this site I knew that Velcade could cause shingles and recognized it when a rash mysteriously appeared on EJs stomach. Because of folks on this site, I also knew about the issues with peripheral neuropathy and some of the measures other folks had found helpful to relive it. The good folks on this site also helped me understand that EJs stem cell transplant had not failed just because he was not in CR at day 100.

While it may seem like a lot of woe and misery -- and yes,we all need to remember to keep living at times -- I really do appreciate how open everyone is, and how much they are willing to share.

Lyn

[Average Joe]

Re: Woe and Misery

by Average Joe on Tue Jul 17, 2012 7:49 pm

Thanks for your comments. Were it not for a nagging cough about a year ago, I probably would never have known that I have multiple myeloma. They discovered I was anemic -- which eventually led to the diagnosis.

So it is early for me - -and I really don't know where this disease will take me......but left untreated, I am sure that it will get worse. I am nearly halfway through a 4-month dex plus Revlimid regimen, and assuming I show a decent response -- my Hb has increasd from 8.0 to 11.0 after seven weeks-- my next decision will be what to do for maintenance.

And I also know that this disease does take many forms......and for some, perhaps it can be managed with little medical intervention......not sure.....but I do believe that less can be more. There are ALSO too many tales of patients choosing extended and aggressive maintenance with a cocktail of agents - aka poisons -- which in turn drive the addition of other drugs to combat side effects.

There are many many drugs and many many choices - which certainly makes things complex.

[NStewart]

Re: Woe and Misery

by NStewart on Sat Jul 21, 2012 2:04 pm

You have a point about there being so many posts that are about woe and misery, but we all learn from those posts and the responses to those posts. Although I have had some rough times with my multiple myeloma, I live a fairly normal life. I have learned so much from the questions that people post on this site. I am able to ask my oncologist more directed questions which leads to more specific answers than he might have given to me.

So, I am able to handle the woe and misery. I would like to hear from more people who have had successes with their diagnosis and treatment.

As far as the people who go through more and more involved therapies as their journey through this disease becomes more difficult, that is each person's individual decision. Many people are not ready to give up on life even if there isn't good quality, while others are more able to accept that the end is here. I don't feel that I have the right to decide who is right in their path and who isn't. My path is my path.

Nancy in Phila

[Stan W.]

Re: Woe and Misery

by Stan W. on Sat Jul 21, 2012 3:46 pm

I was diagnosed 4 months ago with Smoldering multiple myeloma. I have no lesions, anemia, etc. My numbers show SMM but, I feel fine, at least physically. I try not to dwell on this disease too much. Just enough to find the right doctors, studies and drug trials.

I don't like hearing about the cocktail of drugs and their side effects. I'd love to hear from those taking ONE drug and having this disease under control. I'm sure there is someone out there that fits the description.

Doctors at NIH will probably qualify me for a Carfilzomib trial for SMM patients but, I'd rather wait a bit for something a little less intense.

One step at a time without having to dive in head first is what I'd like to do.

[torimooney]

Re: Woe and Misery

by torimooney on Sun Jul 22, 2012 12:04 pm

Stan,
I’m only a few months into this diagnosis of multiple myeloma, having been diagnosed at NIH on my effort to get into their MGUS study. NIH suggested their carfilzomib study but I am not interested. I am not keen on taking any meds that negatively affect my quality of life if I don’t have to. Fortunately, I found a multiple myeloma specialist in LA who believes in a conservative approach and his recommendation is I hold off on any medication for multiple myeloma other than the Zometa, get monthly labs and see him 4x/yr. to reassess the treatment plan. I see a local oncologist that orders my labs and administers the Zometa. The local oncologist is most anxious in treating my numbers and forgets there is a person concerned about quality of life connected to those numbers. I stand my ground with each encounter I have with him. I will start treatment if and when my LA doctor says I should. My numbers may not look so good but I continue to feel great and have no symptoms of multiple myeloma that impact how I feel. I don’t bury my head in the sand, nor do I live in denial about my multiple myeloma. I weigh the benefits to the risks. My approach to multiple myeloma is not for everyone but it works for me and at the moment allows me a good quality of life, both physically and emotionally.

[Dr. Peter Voorhees]

Re: Woe and Misery

by Dr. Peter Voorhees on Sun Jul 22, 2012 2:38 pm

Dear Average Joe,

Just as the disease is highly heterogeneous, so too are the side effects that people experience from treatment. I have many patients that coast right through therapy with surprisingly few side effects, and I have had those who suffer significant problems from treatment. Most people do quite well but do experience some (not all) of the side effects that people post about on this and other related sites. Think of a bell curve when it comes to chemotherapy-related side effects. The extremes do occur, but are less common.

Good luck to you and I hope you continue to do well!

Pete V.