Because I don't know what else to do

Now, I do not want to discourage anyone, but my father died of MM 11/10/07. He was 50 years old and had been diagnosed in March of '06. The doctors say his MM was very aggressive even after being on thalidomide and having a stem cell transplant.

I've become obsessed with the disease and despite losing him I find myself wanting to learn more and more about what killed him.

I guess the only reason I am posting is to let people on here know that I have been reading their posts and that I wish them the best of luck. Just never give up the hope.

Alexis

 

On 1/3/2008 MaryAlexis wrote:

Now, I do not want to discourage anyone, but my father died of MM 11/10/07. He was 50 years old and had been diagnosed in March of '06. The doctors say his MM was very aggressive even after being on thalidomide and having a stem cell transplant.

I've become obsessed with the disease and despite losing him I find myself wanting to learn more and more about what killed him.

I guess the only reason I am posting is to let people on here know that I have been reading their posts and that I wish them the best of luck. Just never give up the hope.

Alexis

Dear Alexis. I am very sorry to hear of your father's passing. It does appear - from my research - that they have identified seven different forms of myeloma. They range from mild to very aggressive. Hopefully, current research and clinical trials will lead to ever more effective treatment for all types of myeloma.

Best regards to you and your family.

Craig 

 

 

On 1/4/2008 photog wrote:

 

It does appear - from my research - that they have identified seven different forms of myeloma. They range from mild to very aggressive. Hopefully, current research and clinical trials will lead to ever more effective treatment for all types of myeloma.

Craig 

 

Dear Craig;

Can you expound on your above statement?

Also, in my research I have found that MM is environmentally contracted. Not genetic or hereditary. Any opinion on this?

Take care;

Kevin

 

Per Guido Tricot at the University of Utah:

Tricot said two important
factors seem to determine who responds best to the treatment: the
genetic make-up of the myeloma cells and how much the disease has
spread.

    "The worst combination is bad genes and lots of disease," he said.

    Chromosome studies, including fluorescence in situ
hybridization, or FISH, and gene array analysis, help doctors better
understand a patient's particular kind of multiple myeloma.
    There are at least seven different types of the disease,
"ranging from very good to very bad," Tricot said. About 10 percent of
patients have the worst, or most aggressive, kind.

As for environmental vs. genetic ... the current consensus is that it is contracted environmentally. MM has been linked to contact with toxic solvents, etc. Dr. Drury, one of the foremost experts on MM, has also attributed the recent rise in MM cases to increases in environmental toxins. I'm also holding out that with some people there is a gluten intolerance/celiac disease precursor to MM. That said ... there is probably a genetic component in terms of how easily one contracts it and how severe it is or progresses once one has it.

Regards,

Craig Persel 

 

On 1/4/2008 photog wrote:

As for environmental vs. genetic ... the current consensus is that it is contracted environmentally. MM has been linked to contact with toxic solvents, etc. Dr. Drury, one of the foremost experts on MM, has also attributed the recent rise in MM cases to increases in environmental toxins. I'm also holding out that with some people there is a gluten intolerance/celiac disease precursor to MM. That said ... there is probably a genetic component in terms of how easily one contracts it and how severe it is or progresses once one has it.

Regards,

Craig Persel 

Good Evening Craig;

I found this article on this sites main page under IMF and Genetic Pathways:

"The study found that genetic pathways associated with the ability to neutralize environmental toxins are defective in patients with classic myeloma (myeloma with bone involvement). These pathways are identified as specific segments of genes called single nucleotide polymorphisms or SNPs that are known to be associated with toxin metabolism and DNA repair. These findings are in line with observations of patient populations and groups of workers including firefighters that had previously demonstrated a correlation between increased risk for myeloma and exposure to hydrocarbons and related chemicals."

Add another group. to the four or so, already identified for high risk in developing MM due to work place exposure.

 A point I'd like to make and ask for some input on its possibility; If workers in the petroleum industry have a higher risk for developing MM, it only stands to reason that firefighters would also. They are both exposed to hydrocarbons. However, the way these people are covered in their protective gear, their exposure to the h-carbons would have to be through inhilation. To take this a step further, could the cancer's entry point be through our lungs/mucuous membranes? Also, could the exposure to the various chemicals be through inhilation of the chemicals' vapors and not actual contact with the toxins?

Concerning the first part of the article and genetic pathways. I believe this supports your hypothesis regarding a genetic component, or a defective one, that allows the cancer to flourish. However, I would like to add that short a defective DNA, could the diet of we patients encourage the proliferation of MM? Cancer, being a living organism, will only thrive in a hospitable environment. If we make our bodies less susceptible to its growth, it would either die or move on! Your comments, please.

As always, your detective work is impressive!

I hope your New Year's Resolutions are still active and ongoing.

Take care;

Kevin

 

 

On 1/3/2008 MaryAlexis wrote:

Now, I do not want to discourage anyone, but my father died of MM 11/10/07. He was 50 years old and had been diagnosed in March of '06. The doctors say his MM was very aggressive even after being on thalidomide and having a stem cell transplant.

I've become obsessed with the disease and despite losing him I find myself wanting to learn more and more about what killed him.

I guess the only reason I am posting is to let people on here know that I have been reading their posts and that I wish them the best of luck. Just never give up the hope.

Alexis

Hi Alexis,

I am so sorry to hear about your Dad..  My sister Denys is 55 and has a "the worst form of mm".  She was diagnosed in August of 06 and hasn't responded to any treatments to date.  She was on revilimid, had a stem cell, and was on velcade.  My sister is doing awful.  She has formed two tumors in her back, now there is one in her neck, and a small one in her leg.  The MM has also formed a mass in her pelvis and groin area which they are unable to remove.  She underwent radiation and so far it looks like this also has failed.  My sister says she will not go back on the Velcade because of the nerve damage it has caused in legs.  She is in relentless horrible pain in her legs and feet.  I asked her what will she do? She doesn't know yet and says that there really aren't many options left for her, but the velcade is out of the question.  She will never go on it again like she was it was actually killing her..  I am hoping her Dr. suggests the Rev/Vel/Dex combination I am told this might work for a few months but then she will be right back where she currently is.  Deny said that she has started to hunch over in her back now.  I am so upset that the end for my sister could quite possily be grownig near. I don;t want to be selfish and have my sister living with this pain because I can't stand the thought of ever losing her.  I know it is very hard for her to have to live everyday in pain.  I do understand that this is no quality of life for her at all.  We did go to UMAS in LIttle Rock for the stem cell transplant.  The care was good but even they so far were unsuccessful in helping Denys live any sort of normal life.

My heart really goes out to you and your family.  I took my parents to the airport yesterday.  My sister has been home in Tampa and they went to see her and help her with her daily activities.  The hospital removed one of the larger lumps on her back last week and we havent' recieved the path report yet.  Is it really going to matter I ask myself whether the tumor is benign or malignent? She has MM and it has already gone into both Tibia's in her legs.

I cry alot  , knowing that my sister could only have a few months left to live, no-one knows for sure but I am told her Dr. isn't very optimistic at all.

Could you tell me alittle about your dad , did he try everything Denys has done?  Did he have pain in the legs?  Did he develope tumors?

I don't mean to ask so many questions but I love Denys with all my heart and yet I still remain hopeful that they will give her some magic pill and it will go away for a least a few more years.

 

Thanks and God Bless

Susan

Very nice detective work yet again!

Great point about inhalation vs. contact. There has been - I believe - a large number of MM cases with people in the 9/11 WTC zone which has verified a lot of theories about environmental toxins and MM. Your inhalation theory would fit with these 9/11 hazards (i.e. airborne toxins). Also, my wife had a painting business for several years when she was in her 20's which involved use of a lot of toxic materials, as well as breathing in toxins while power sanding old paint off old homes. I'm fairly convinced that this has played a part in her developing MM.

As for diet ... I think making our bodies as hostile to cancer as possible certainly can't hurt. An alkaline (rather than acid) is one approach. Another is oxygenation. Cancer cells don't do as well in an oxygen rich environment. Exercise (e.g. walking) is good - and I think - an important component in the healing process. Lastly, a gluten-free or gluten-reduced diet could also help with MM. Stress also sets the stage for cancer on many levels, so stress reduction techniques and lifestyle could be important. Alkaline + oxygenation + gluten-free + reduced stress = anti-cancer environment.

Regards,

Craig Persel 

Very sorry to hear about your Dad, that’s extremely sad news for you and your family. Was his condition Myelofibrosis? I really feel for you, my poor partner has this disease and he is in good health at the moment although unless they find the magic bullet his future has a big question mark over it! Best wishes to you and your family, you have loads to deal with and process!

On 1/6/2008 Bayshore wrote:

 

On 1/3/2008 MaryAlexis wrote:

Now, I do not want to discourage anyone, but my father died of MM 11/10/07. He was 50 years old and had been diagnosed in March of '06. The doctors say his MM was very aggressive even after being on thalidomide and having a stem cell transplant.

I've become obsessed with the disease and despite losing him I find myself wanting to learn more and more about what killed him.

I guess the only reason I am posting is to let people on here know that I have been reading their posts and that I wish them the best of luck. Just never give up the hope.

Alexis

Hi Alexis,

I am so sorry to hear about your Dad..  My sister Denys is 55 and has a "the worst form of mm".  She was diagnosed in August of 06 and hasn't responded to any treatments to date.  She was on revilimid, had a stem cell, and was on velcade.  My sister is doing awful.  She has formed two tumors in her back, now there is one in her neck, and a small one in her leg.  The MM has also formed a mass in her pelvis and groin area which they are unable to remove.  She underwent radiation and so far it looks like this also has failed.  My sister says she will not go back on the Velcade because of the nerve damage it has caused in legs.  She is in relentless horrible pain in her legs and feet.  I asked her what will she do? She doesn't know yet and says that there really aren't many options left for her, but the velcade is out of the question.  She will never go on it again like she was it was actually killing her..  I am hoping her Dr. suggests the Rev/Vel/Dex combination I am told this might work for a few months but then she will be right back where she currently is.  Deny said that she has started to hunch over in her back now.  I am so upset that the end for my sister could quite possily be grownig near. I don;t want to be selfish and have my sister living with this pain because I can't stand the thought of ever losing her.  I know it is very hard for her to have to live everyday in pain.  I do understand that this is no quality of life for her at all.  We did go to UMAS in LIttle Rock for the stem cell transplant.  The care was good but even they so far were unsuccessful in helping Denys live any sort of normal life.

My heart really goes out to you and your family.  I took my parents to the airport yesterday.  My sister has been home in Tampa and they went to see her and help her with her daily activities.  The hospital removed one of the larger lumps on her back last week and we havent' recieved the path report yet.  Is it really going to matter I ask myself whether the tumor is benign or malignent? She has MM and it has already gone into both Tibia's in her legs.

I cry alot  , knowing that my sister could only have a few months left to live, no-one knows for sure but I am told her Dr. isn't very optimistic at all.

Could you tell me alittle about your dad , did he try everything Denys has done?  Did he have pain in the legs?  Did he develope tumors?

I don't mean to ask so many questions but I love Denys with all my heart and yet I still remain hopeful that they will give her some magic pill and it will go away for a least a few more years.

 

Thanks and God Bless

Susan

Hi Susan, My father was diagnosed in March 06 and immediately was put on Thalidomide. He was on that and received radiation for a few weeks on his upper spine where they originally found the lesion that lead to his diagnosis. He stayed on the thalidomide until he was ready for his stem cell transplant, which occurred in September 06. He was in the hospital for about 3 weeks and then was brought home to recover. He regained much of his strength back and started putting on more weight. He was doing awesome (they even said he was in remission). Then in May of 07 he started to get these intense headaches near his left eye. It took the doctors until mid June to figure out that it was actually a MM mass. (For the longest time they attributed the pain to cluster headaches and even allergies). He was in and out of the hospital June and July and seemed to be responding to the radiation and he started a new chemotherapy. And at each doctor visit they all said his "counts looked great." In early October he started to feel more pain in his back and eventually he lost all feelings in his legs... they found a tumor compressing his spine. The tumor was extracted October 6, 2007. He never left the hospital after that. They just kept finding more tumors - in his arm, back, lungs, and brain - the doctors said the tumors were growing like crazy but would try him on Revilimid - but there was only a 10% chance it would work. Finally the doctors said that if they tried anything more intensive that would kill him because he was so weak to begin with. So, my mom signed a DNR and 6 days later he died. The weirdest part to me was that he was fine and considered in remission and within a matter of literally a month, the cancer just consumed his body... it did not seem like a gradual process at all. Well, I will say that for me I find some comfort knowing he is no longer suffering or in pain - it was horrible to see my own parent upset and crying and just miserable, especially when there was nothing I could do. I will keep your sister and your family in my prayers! Alexis

Hi, I have MM and have been disappointed in my consultant's lack of interest in my background and how I may have developed the disease. As a lab technician I have worked with a variety of chemicals, in my youth we used chemicals which are now seen as carcinogenic e.g. benzene, and had little protection from the radioactive compounds we used.  For eight years before diagnosis I worked on heavy metal analysis, chiefly cadmium. I was also a single working mother for 16 years, which caused constant stress. I feel all this contributed to the development of MM. If someone was interested in gathering info. on MM sufferers backgrounds, it may not help us but would help prevent this happening to others.... all the best Carol