I have been away for awhile but here goes. Christmas was in hospital couldn’t breath found copd and breast cancer on left breast of course mms found 3 little lesions on
left lung. Went back to hospital on Jan 8 2014 lost sight of left eye. Taking Dex and radiation for 10 days.a little help but time tells. I am asking for a prayer or 2 and maybe someone else has gone through this and can tell me what worked. I know mms is all around eye orbs and around nose and back of eye and causing pressure has anybody been through this. Must let you know I’m very depressed and I am trying so hard to understand. I know typing is terrible please excuse thanks for all answers
Donna
So sorry to read this, Donna. I'm in the early stages of treatment of this disease, so I haven't experienced anything like you describe. But I just wanted you to know that people are out there who are thinking of you, and my husband and I are sending up prayers for you. A virtual hug to you from me, Tammy
Hello, Donna, I'm so sorry for both your disease progression and your depression. My prayers are with you.
Can I ask a few questions to help me catch up? First, where are you getting treatment? Second, what treatments have you had? Third, does the progression to your eye mean that the MM has spread to your brain? If so, my husband had a similar situation. At UAMS in Little Rock, Arkansas, the medical team was doing spinal taps of chemo directly into his Central Nervous System.
Best, Joni Aldrich
Donna, you are in my prayers. Sad to hear what you are going through. I understand your depression. Try to concentrate on something in the future that you can look forward to. Some little thing can make a big difference!
Keep us posted.
Karla
Wull be praying for you Donna. I had problems w/my eye/temple area after transplant & dr wasn’t sure whether it was mm or meningioma sitting on my trigeminal nerve. Had gamma knife @Hoag Hosp & that rook away the pain & numbness. I also now have glaucoma from the Dex so eye drops everynite for that. I’ve been in complete remission for 21/2 yrs so all worth it!
Monica said:
Wull be praying for you Donna. I had problems w/my eye/temple area after transplant & dr wasn't sure whether it was mm or meningioma sitting on my trigeminal nerve. Had gamma knife @Hoag Hosp & that rook away the pain & numbness. I also now have glaucoma from the Dex so eye drops everynite for that. I've been in complete remission for 21/2 yrs so all worth it!
Dear Donna
So sorry to hear of all you are going through. Make sure you are with a hematologist/oncologist who is very familiar with MM. Even if you have to go for a consultation out of town it will be worth it.
I see my regular h/o every week for treatments, Dex and Velcade and every 3-4 month I see a specialist on MM in Philadelphia at the Parelman Cancer Ceter of the U of P Hospital. He advises treatment and keeps a sharp eye on my condition.
I will tuck you into my Rosary prayers. At this point all prayers are more than welcome. We need all the help we can possibly get.
Let all of us know how you are progressing.
Wish you a very successful treatment
Liz in Pa.
I haven't been on here for a long time either, I too have MM. Your post Donna has my heart going out to you along with prayers being said for you. I'm sorry for all your going through. I haven't had any problems like you. Have you tried talking to your doctor about your depression, I'm sure they know that this can happen to a lot of people with cancer, no matter what kind of cancer. Maybe their is something they can give you.
Hugs from Louisiana, Toby
Toby thank you and I do take meds for depression I’m just mad and I feel that a lot of beans so to speak has been thrown on my plate and I’m just trying to sort them out as best I can. I hate being sick and I hate the mm and I hate taking the meds and radiation and I want a cure and I want answers I know a lot and I want a cure now cause I’m the type of person that need logic no logic don’t make sense. I sstalways tell my kids I’m going to live to be a 103 years old just to make them mad but on days of docs radiation I just don’t know thank you for your words God bless
To Joni
I found u so interesting with questions. First i receive my treatments in Cleveland Ohio at the Seidman Cancer hospital here in Cleveland which is only 2 or 3 years old all of my docs are onc docs and take very good care of us. The hospital itself is for cancer people. Right now it is Dex and radiation. I go to this hospital for all my cancer treatment cause I trust my life with them and they are all good at what they do. i feel that the treatment they r giving me is right so the mm dont go anywhere.going to my brain i will have to see I try to take the high road. I also feel that Cleveland will be a hugh medical city with Cleveland Clinic University Hospital and Meto Hospitals we also have the Medical Mart here but where I go to seidman University Hospital it seem they are all onc docs and know what they are doing. The treatment is working but i waited a long time to see a doc cause it was me being afraid.dont be me. I hope u will take a moment and look this hospital up on line to form your own opinion. Bless bless
donnaw
Hello, Donna, it seems you are really happy with your medical team, and that is so important. The reason I asked is because MM is a rare cancer--around 18,000 new cases per year. It is a "stealthy" cancer, and -- much like leukemia and lymphoma which are also blood cancers -- it can turn up anywhere. Since I haven't been along with you on this journey, I hope that you'll forgive me if I ask you a few more questions.
Have they tested your kidney's? What are your MM blood markers? When they tested your bone marrow, did they do a gene array? Were your chromosomes affected? (This is an important question that tells if your MM is aggressive.) Have you asked your oncologist how many cases of MM he has treated before? How many cases they treat per year at that facility?
My husband was 43 when he was diagnosed. We trusted our local, highly-rated university hospital, but they had not treated many cases of MM. (In fact, they put Gordon through 2 very painful surgeries that we always believed after he got to the right treatment facility--were unnecessary.) After 5 months of "standard" chemo and radiation, Gordon's cancer was 3X WORSE than before any treatment at all. Gordon's oncologist called me at work and basically said he gave up on Gordon. By the time we got him to the Multiple Myeloma Institute in Little Rock, Ark., he had over 200 tumors in his bones and growing out of his skin. They did ONE course of more aggressive chemo, and within 3 weeks all of the tumors were gone. Unfortunately, the cancer still had a stronghold in his body because of the wasted time. His cancer had started in his spine, and after 3 outpatient stem cell transplants one of the tumors in his spine ruptured and sent the cancer to his brain. He died 2 years to the day after he was diagnosed--even after we were being treated by one of the top MM researchers in the country.
This is such a difficult disease to control. It has more twists and turns than anyone can imagine--such as collapsed vertebrae. In the work that I do now, I believe that it's ALWAYS good to get a qualified (not cookie cutter) 2nd opinion, and even sometimes a 3rd opinion. I've dedicated my life to telling Gordon's story, because treatment for ANY CANCER is complex and the knowledge of different cancers varies from hospital to hospital. With over 120 different kinds of cancers (which are really many different diseases that are somewhat related), what hospital would be able to treat all of them?
Just Dex (steroids) and radiation? No Velcade or Thalidomide?
Two great MM organizations offer great knowledge and support, and it's free to call with questions: http://www.themmrf.org/ (The MM Research Foundation has a "Speak to a Nurse" option) and http://myeloma.org/Main.action (International Myeloma Foundation has a "Need Help" call option).
You can learn more about my work at www.JoniAldrich.com or www.thecancerlifeline.com. I do this from the heart.
Sorry for the long message. I certainly believe in a patient's personal choice, but I think sometimes we're "too close" to see the whole picture. That's especially true with cancer, because of the fear factor.
Best, Joni
donna w said:
To Joni
I found u so interesting with questions. First i receive my treatments in Cleveland Ohio at the Seidman Cancer hospital here in Cleveland which is only 2 or 3 years old all of my docs are onc docs and take very good care of us. The hospital itself is for cancer people. Right now it is Dex and radiation. I go to this hospital for all my cancer treatment cause I trust my life with them and they are all good at what they do. i feel that the treatment they r giving me is right so the mm dont go anywhere.going to my brain i will have to see I try to take the high road. I also feel that Cleveland will be a hugh medical city with Cleveland Clinic University Hospital and Meto Hospitals we also have the Medical Mart here but where I go to seidman University Hospital it seem they are all onc docs and know what they are doing. The treatment is working but i waited a long time to see a doc cause it was me being afraid.dont be me. I hope u will take a moment and look this hospital up on line to form your own opinion. Bless bless
donnaw
Hello Donna, my heart cries out for you, you certainly are having a rough time with things. I have read all the responses to your discussion. The people on this site have all been effected by MM in one way or another, some of us are fighting it while others have had their lives changed by it forever. I agree with Joni I would think revlimid and velcade would be in your treatment cocktail. Dexamethasone, Velcade and Revlimid seems to be the preferred and one of the most aggressive treatment regiments. I would certainly question about it, there are many treatment options and new drugs for treatment. I am going to add a link to the myloma beacon, it is a site dedicated to MM, results of treatment studies are there plus information on the latest treatment options http://www.myelomabeacon.com/ I think this is one of the best site's to follow. There are also links for all the latest clinical trials.
Donna, I will include you daily in my prayers, may God Bless and care for you, trust in him for all things. Become as a child, blindly trust your father for all things work for our good.
Rodney