[yemesrach]

Re: What do we do: chemo or delay?

by yemesrach on Sat Nov 22, 2014 7:20 am

My dad was told on 19 June 2014 in Washington DC that he has multiple myeloma by oncologist and have to start in one week a chemo therapy. He like Laura had only the B of the CRAB, close to 2.45 kappa lambada ratio and only 10-20% plasma cells in bone marrow. Like you are, I was overwhelmed with the world of myeloma and what it means to my father and how to proceed. But with the help of God, prayer, and the internet forums like this one I discovered that it is good to do second opinion with multiple myeloma specialist and we should not rush him to chemo.

We took him to California to Dr. Berenson with all his medical documents. He looked at all his documents, done a blood works, and asked for the x ray result and decided that, from the blood work, he does not think chemo is right for him for now. BUT he did suggest that we should do Zometa to deal with his bone.

We went back in October to the oncologist in DC and we did blood work then. Still we did not do anything apart from changing his diet and living style. The Washington doctor said well he agrees with the opinion of Dr. Berenson. I assume they talked. And confirmed Zometa is the drug we should start on monthly basis. We have not still started that since we have to do his dental work yet. We kept the vegetable juice, balanced diet, and curcumin.

I have learned a lot from this forum. As has already been said, all of us are different -- so is the state of the disease.

My only reason to write you is that you will not get a definite answer on which path is right. You have to use your own judgment. But the proposal to mix both is a sound one. You have now one month window to see how she is progressing with intensive alternatives and then see the blood work if any change to be observed. But the priority should be to see a specialist. The bone issue is already there, so you have to deal with it whether you decide to do chemo or not.

In our case, we are hoping that he is stable for longer and we do not have to do chemo. I think I am as scared as you are on this. But , slowly we are all getting ready for the eventuality. In the mean time, for me I was thinking to take him if it progress to Dr. James Forsythe, who has a high survival rate for cancer. Though not a multiple myeloma specialist, but treats it. The reason being he uses both natural and conventional and he uses methods to identify the best drugs for patient based on a test.

All the best and, before I close, please, the initial phase is overwhelming and remain focused and prayer helps a lot.

[Dano]

Re: What do we do: chemo or delay?

by Dano on Sat Nov 22, 2014 10:58 am

Hello Laura and Mark, I'm sorry to welcome you to the Beacon, however you have arrived at a great source of information provided by people who have been through and experienced just about everything you can imagine with multiple myeloma.

You have received some excellent and wise advice from previous posts and I would recommend you re-read Eric's posts again -- he hit the nail on the head. Practicing a healthy life style and good eating habits will better prepare you for the battle ahead, but I do not believe, nor is there any evidence, that the holistic approach to treating myeloma is successful.

You have seen five doctors and they all agree that chemo is your best option. You are fortunate to live in central Florida and have close access to Moffitt Cancer Center. Moffitt has several physicians who specialize in myeloma treatment and research, and they are on top of the latest treatment options. I am being treated at Moffitt and recently had a stem cell transplant. You will not be disappointed with the care and compassion the team at Moffitt will provide. In my opinion they are the best. The team at Moffitt leave no stone unturned, will keep you informed, answer every question, replay to every phone call and email and its all done with a genuine caring attitude. They are specialists in myeloma and that is what you need to control this disease.

Please don't find yourself short, thinking the holistic approach will control myeloma, only to find yourself battling a more advanced stage of the disease because of a delay in effective treatment. Give Moffitt a call -- they are the best!

[Salzmav]

Re: What do we do: chemo or delay?

by Salzmav on Sun Nov 23, 2014 4:02 am

Eric Hofacket wrote:

Really? What do they know? Have they been through it? I do not believe that and I have done chemo and SCT. "

I concur. I have had chemo, had my stem cells collected, and am about to have a SCT. So much woo about chemo - IT REALLY ISN'T THAT BAD. I mean, it's not great – but, hey, neither is childbirth. What you get at the end, like childbirth, is well and truly worth it. So what if you go bald for a bit? If you're prepared to change your lifestyle that radically, think of yourself as a Buddhist in training.

I was out load and proud to be bald. And people were SO nice and considerate. My hair grew back, from being dead straight to lots and lots of ringlets! I am about to do daily chemo now, and I may or may not lose my hair - I don't care! There is one thing for sure - you certainly lose your hair when you are dead!

I was a bit put off food, and a lot of my tastes changed - but that's ok too - I am now eating healthier.

I used to be a real beauty. I had my time in the sun. Now I go for comfort.