Early Stages/ Aggression Of Disease

Hi All,

My husband is choosing not treat at this point as it seems he is early in the disease. My question is- what is considered aggressive, certain types of the MM or how the disease itself progresses in the individual? Also anyone out there who has waited in the early stages of the disease to be treated-how long before the disease kicked in so to speak needing more aggressive treatment. How long does does it take the Myeloma cells to build up beyond the less than 1%?

Anyone using complimentary meds besides the Fever Few and Curcumin that is helping? Anything helping to strengthen the bones or boost the immune system to help stablize or fight the cancer?

Thanks,
Cary,
Care giver of my beloved husband (53yrs old)
Diagnosis: December 07
IgG Kappa MM Stage 1
IgG -1817
Beta B2-2.21.
Bone marrow biopsy-less than 1% Myeloma cells
Cytometry Analysis-IgG kappa plasma cell (CD 38 Bright)-.14%
WBC & RBC and rest of blood work seem fine.
Albumin 4.3
No protein in urine
Lytic Lesions- 1 on 6th rib right side—3.8 by 1.7 by 3.5 cm & 1 small partial (suspect for Plasmacytoma) on 1st mid rib left side
No abnormal Chromosome 13

Your husband is in a perfect position to treat his MM with alternative supplements. The primary, scientific research supported products are:

Zyflamend, proteolitic enzymes (WobenzymN), curcumin, resveratrol, quercetin, fish or flaxseed oil, ursolic acid foods/herbs (apples, prunes, pears, rosemary, lavender, oregano, thyme, holy basil). A few of these ingredients are part of the Zyflamend formula.

For the bones ... hekla lava is a great homeopathic remedy. Stay away from Vitamin D because of potential hypercalcemia with myeloma. Lots of walking to keep up the bone density and strength.

I hope this helps.

Best regards,

Craig Persel 

Hi Gibby~~  Just out of curiosity, what was your oncologists suggestion for your first line of defense for your husband?  I would just like to know what doctors are recommending for someone who is just a the very first footstep of this journey.  Also, what took him to the doctor in the first place and why was he tested for MM?

I don't know enough about the alternative medicines, but Craig certainly does.  I would only add that your husband should probably be drinking at least 2 litres of water everyday, no matter what the season.  As I'm sure you will realise after reading this board, kidney problems are one of the main issues facing MM patients further down the road.  For some people it is difficult to drink this quantity, but it will help to keep his kidney's healthy and avoid ending up on dialysis. 

You are lucky that you have found this board so early in his diagnosis for there are many answers here which will save you/him lots of worry, solving issues as they arise.  Good luck and best wishes as you join the fight against MM.  Cath 

 

On 12/18/2007 poppy/cath wrote:

Hi Gibby~~  Just out of curiosity, what was your oncologists suggestion for your first line of defense for your husband?  I would just like to know what doctors are recommending for someone who is just a the very first footstep of this journey.  Also, what took him to the doctor in the first place and why was he tested for MM?

I don't know enough about the alternative medicines, but Craig certainly does.  I would only add that your husband should probably be drinking at least 2 litres of water everyday, no matter what the season.  As I'm sure you will realise after reading this board, kidney problems are one of the main issues facing MM patients further down the road.  For some people it is difficult to drink this quantity, but it will help to keep his kidney's healthy and avoid ending up on dialysis. 

You are lucky that you have found this board so early in his diagnosis for there are many answers here which will save you/him lots of worry, solving issues as they arise.  Good luck and best wishes as you join the fight against MM.  Cath 

Yes, the kidneys ... I completely forgot. Like Cath said ... plenty of water. Also, liquid Milk Thistle is excellent.

Regards,

Craig 

 

Hi Craig!

I am new to this site.  My father was just diagnosed with Stage IIIA, we are waiting for full body CT Scan Jan. 3/08.  Initially tumor blocked his nasal, came through the cheek bone (11mm x 6mm), and drained through the roof of his mouth.

As we are still waiting for treatment, prognosis, I feel we need to start doing something now.  I was looking at your alternative treatments, Zyflamend, proteolitic enzymes, resveratrol quercetin, fish or flaxseed oil, ursolic acid foods.  Are these common items you can purchase at a health food store?  I bought him a 2 litre jug today, so he can start drinking 2 ltrs. per day.

Any idea of what we can expect?  Just going crazy with not knowing, but want to immediately get him going on something until they decide how to treat him.

Any comment would help.

Thanks.

 

On 12/18/2007 patients daughter wrote:

Hi Craig!

I am new to this site.  My father was just diagnosed with Stage IIIA, we are waiting for full body CT Scan Jan. 3/08.  Initially tumor blocked his nasal, came through the cheek bone (11mm x 6mm), and drained through the roof of his mouth.

As we are still waiting for treatment, prognosis, I feel we need to start doing something now.  I was looking at your alternative treatments, Zyflamend, proteolitic enzymes, resveratrol quercetin, fish or flaxseed oil, ursolic acid foods.  Are these common items you can purchase at a health food store?  I bought him a 2 litre jug today, so he can start drinking 2 ltrs. per day.

Any idea of what we can expect?  Just going crazy with not knowing, but want to immediately get him going on something until they decide how to treat him.

Any comment would help.

Thanks.

Most of those items are available from well-stocked health food stores. Another good resource is iherb.com. A great online company with unbeatable prices and service. I use them for many of these items.

Regards,

Craig 

A bit of history and suggested treatment: We live in Northern California. My husband is 53yrs. old and is a District Supervisor for the road department so he has worked with all the oils, etc.(possibly Benezine) and we live close to an orchard that sprays at night. He blew out his lower back in 2001 (may have to readdress this in light of his disease but it just seems a compressed disk at this point.) He was sick for over 9 months. Two Mondays in a row: headache, burning in the stomach, pain & popping in the right rib. Then a lingering cough and rib pain. After 5 drs. & a lot of blood work they concluded a virus. 8 months of a chronic dry cough and continual pain in the rib, I insisted on a CT scan which revealed a lytic lesion on his rib, Biospsy result-Plasmacytoma. His onc/hemalogist said his bone survey came back fine, but when I got a copy of the report and read it later, I saw where it question a spot on Clavicle. When we went back to the onc he wanted to do radiation on the rib and I question the possibility of another lesion from the bone survey and asked if it were a lesion...would he still treat the same. No he wouldn’t and thought we had better do another CT Scan on the spot in question. Good thing as the CT Scan showed another lytic lesion. No Protien in his urine test but his output is high (not high enough according to the Onc) which I am finding out is a sign of the disease (there is calcium and his urine is diluting it which is good because it can’t clog kidneys). A visit to the Onc/Hem yesterday answered all our current questions for now. We requested a bone density and PET Scan. My husband’s diagnosis at this point is IgG Kappa Myeloma, stage 1 headed for stage 2. Possible choices suggested from the Onc: Talk to radiologist after the PET Scan about the rib (concern is that it will continue to grow) Zometa to build the bones Revlimid and Decadron SCT was mentioned but not for now or we could wait We are very new to all this and feel there is more testing (MRI & Pet Scan) to be done to get a full picture. We are not in a hurry for the treatment at this time and would like to research and get a 2nd opinion from a MM specialist. Our onc. is not an MM specialist, although he seems very informative and up on the latest info. Not opposed to 2nd opinion and very willing to answer all our questions and do further testing. We do like him a lot. We read so much about the side effects of the treatments and how the drugs eventually fail and you move on to another drug. Side effects are treated with more drugs. Verdict seems to be out on which is best, chemo alone or chemo followed by SCT.(90% fall out of remission requiring a 2nd SCT & possibly a 3rd SCT, wonder if this is because they reintroduce his own SC’s and it still has myeloma cells in it. My brain wonders if this is why there is relapse??? Then you have the bone pain from the lytic lesions....all so hard to wade through. The Chemo and Stem cell seems pretty radical and MM Drs. are not in complete agreement with treatment of this. Radiation verdict is out with MM Specialist too as I see that some would say yes and others no. What turned us off was the fact that it could weaken the rib and it could feel like a cracked rib (painful). When my husband ask about the lung being so close..the onc’s response was “you can live with one lung.” Not acceptable to us! At this point my husband has decided no chemo or stem cell. We are thinking of something to build his bones other than Aredia or Zometa as both only have side effects and I think we may be able to do something that would be more beneficial for the body..so we are asking a lot of questions and doing research. We are wondering the out come of the disease when left untreated by conventional meds when in stage 1? I have read a little over 5 years, but is that with or without prior treatment? How fast do the lesions come/grow and is the disease worse if you have lesions? Any supplements tried that build up then bones? Any input is greatly appreciated. My husband would rather have quality than quantity of life. He knows where he will go if the Lord chooses to take him home. We are deeply in love and have been married for 32 years. Two children living and two in heaven, and 4 darling grandbabies. Gibby

Yes, he is drinking plenty of water. We have a pretty good understanding of what MM is but not how fast it progresses or how the determine when it is aggressive. Lots of questions... Gibby

What a comprehensive response Gibby!!  And it amazes me in that if my husband were writing about me in the early stages it would have been very similar!  Funnily enough I was born and raised in 'northern California' -- Berkeley to be exact!  My dad was heavily involved with the radiation lab. at Cal Uni and I can remember going (as a young child) to visit the HUGE linear accelorator that was, in those days - 50 odd years ago -- being used to treat cancer patients.  The machine was larger than the entire oncology wing of our local hospital over here, but todays linear accelorators can fit in a room thats about 40 x 40 feet -- unreal!  Who would have ever thought that I would need that form of treatment myself some 50 years later!!  My first form of treatment was the 'zap' to my back and it did substantially reduce my pain.   Like your husband I have had back troubles for years and have had the list of treatments, but it wasn't until I went to a local osteopath - as a last resort - and he was an extremely ethical man - who told me after a few visits that he didn't feel I was getting better and referred me back to my doctor who started the list of x-rays -- full skeletal, nuclear scans, bone density, ets, and finally the bone marrow biopsy which was the definitive measure for multiple myeloma. This was done in conjunction with all the blood tests (CBP & paraprotein etc.) and the 24 hour urine collection.  If you/he did all of this then it would be very clear.  I like the sound of your doctor -- he really seems to be 'in the know' regarding the latest in treatment options, and he's not even an oncologist!  I think that you will probably find that the oncologist will confirm what your own doctor has already said. I applaud your husbands desire to have a 'quality' of life.  In his position I would do what he is doing by getting all the education possible. I rushed into treatments without research and suffered the consequences, however I was further along in my diagnosis by the time I learned that I actually had MM.  Those consequences have made my quality of life much worse, but I have had more 'quantity' than was initially thought possible, so hey, win some, lose some.  I'm still here and as far as those around me are concerned, that's all that matters!!  Only I know the cost in pain, but truthfully, with the amount of medication I take, much of it is masked to people who don't know me very well. Listen to people like Craig who know heaps about alternative therapies, and I'd recommed a lovely little book to you by Vickie Giard called 'There's no place like HOPE -- a guide to beating cancer in mind-sized bites.  Vicki has put much of the horror stories about cancer into everyday language and explaination.  She has used her own experience and the experiences of others whom she met along the way to help others and she used both natural as well as medical therapies.  Vicki recommend the Cancer Tretment Centers of America (CTCA) who seem to have at least 4 centers in the USA -- I think there is one in the West -- and they seem to have the same philosophy of being positive and using a variety of means in facing the cancer journey.  If I lived over there I would be making a visit to see and be counselled by them. OOps, this was not meant to be directional with regard to treatment -- you seem to me to be on the right track already.  The similarities between your husband and myself just surprised me!  Good luck to you both -- you don't have to rush into anything so use the time to make informed decisions and go from strength to strength!!  Best wishes to you both, Cath 

 

On 12/18/2007 gibby56 wrote:

A bit of history and suggested treatment:
We live in Northern California. My husband is 53yrs. old and is a District Supervisor for the road department so he has worked with all the oils, etc.(possibly Benezine) and we live close to an orchard that sprays at night. He blew out his lower back in 2001 (may have to readdress this in light of his disease but it just seems a compressed disk at this point.)

He was sick for over 9 months. Two Mondays in a row: headache, burning in the stomach, pain & popping in the right rib. Then a lingering cough and rib pain. After 5 drs. & a lot of blood work they concluded a virus. 8 months of a chronic dry cough and continual pain in the rib, I insisted on a CT scan which revealed a lytic lesion on his rib, Biospsy result-Plasmacytoma. His onc/hemalogist said his bone survey came back fine, but when I got a copy of the report and read it later, I saw where it question a spot on Clavicle. When we went back to the onc he wanted to do radiation on the rib and I question the possibility of another lesion from the bone survey and asked if it were a lesion...would he still treat the same. No he wouldn’t and thought we had better do another CT Scan on the spot in question. Good thing as the CT Scan showed another lytic lesion.

No Protien in his urine test but his output is high (not high enough according to the Onc) which I am finding out is a sign of the disease (there is calcium and his urine is diluting it which is good because it can’t clog kidneys).

A visit to the Onc/Hem yesterday answered all our current questions for now. We requested a bone density and PET Scan. My husband’s diagnosis at this point is IgG Kappa Myeloma, stage 1 headed for stage 2.
Possible choices suggested from the Onc:
Talk to radiologist after the PET Scan about the rib (concern is that it will continue to grow)
Zometa to build the bones
Revlimid and Decadron
SCT was mentioned but not for now
or we could wait
We are very new to all this and feel there is more testing (MRI & Pet Scan) to be done to get a full picture. We are not in a hurry for the treatment at this time and would like to research and get a 2nd opinion from a MM specialist. Our onc. is not an MM specialist, although he seems very informative and up on the latest info. Not opposed to 2nd opinion and very willing to answer all our questions and do further testing. We do like him a lot.

We read so much about the side effects of the treatments and how the drugs eventually fail and you move on to another drug. Side effects are treated with more drugs. Verdict seems to be out on which is best, chemo alone or chemo followed by SCT.(90% fall out of remission requiring a 2nd SCT & possibly a 3rd SCT, wonder if this is because they reintroduce his own SC’s and it still has myeloma cells in it. My brain wonders if this is why there is relapse??? Then you have the bone pain from the lytic lesions....all so hard to wade through.

The Chemo and Stem cell seems pretty radical and MM Drs. are not in complete agreement with treatment of this. Radiation verdict is out with MM Specialist too as I see that some would say yes and others no. What turned us off was the fact that it could weaken the rib and it could feel like a cracked rib (painful). When my husband ask about the lung being so close..the onc’s response was “you can live with one lung.” Not acceptable to us!

At this point my husband has decided no chemo or stem cell. We are thinking of something to build his bones other than Aredia or Zometa as both only have side effects and I think we may be able to do something that would be more beneficial for the body..so we are asking a lot of questions and doing research.

We are wondering the out come of the disease when left untreated by conventional meds when in stage 1? I have read a little over 5 years, but is that with or without prior treatment?

How fast do the lesions come/grow and is the disease worse if you have lesions? Any supplements tried that build up then bones?

Any input is greatly appreciated. My husband would rather have quality than quantity of life. He knows where he will go if the Lord chooses to take him home. We are deeply in love and have been married for 32 years. Two children living and two in heaven, and 4 darling grandbabies.

Gibby

Wow. Very comprehensive description.The Aredia or Zometa won't build bone, but they do help to keep the bones from dissolving. To build bone don't use Calcium or Vitamin D because of the threat of hypercalcemia with MM. I would recommend a homeopathic remedy such as hekla lava which will utilize the body's natural resources to build bone.

I've listed many supplements in my posts that have been specifically used for myeloma. They are most effective in the early stages or after remission to keep from relapsing. However, if the supplements do not keep the MM in check it is my personal feeling that medication (e.g. Thalidomide, Velcade or Revlimid) be started right away. MM is very individualized. For some supplements are enough, for others medication and for others medication + SCT. It doesn't seem to be consistently predictable.

The very best to you and your husband.

Craig