Cancer Survivors Network - Multiple Myeloma - Comments

Riding the Roller Coaster

MMSpouse — Sat, 21 Jan 2012 09:07:35 -0500

Hi again,
So my husband finished his chemo regimen and is now officially on maintenance taking Revlamid orally. When we went to his appointment last week he was told he was in VGPR. I thought we were going to hear some big long medical term, but it ended up being Very Good Partial Response, meaning 90% of his cancer was gone. His M spike stabilized at .5 which they said was good since when he was diagnosed it was 4.7. So they felt he was in a place where the cancer had stabilized and further chemo infusion would not do anything more. They hope now the Revlamid along with his own immune system will either kill the rest of the myeloma or keep it in a stable condition. I did ask how long this could last, and they said they have one "superstar" patient who lasted 48 months on maintenance. It's funny how when you first hear that it's exciting and you feel a sense of relief. Then later, in the sleepless hours of the night 48 months (if you are a superstar patient) doesn't seem that long. I guess my husband was right...why put a number on it? For so long I wanted some sort of prognosis or estimate, and I finally got a number...and now I don't want it. I guess this is the roller coaster ride we are all on.
I am so sorry to be so down...it's just such a tough road and some weeks are worse than others. I was trying to wait till I felt a little more positive to write back, but the positive just doesn't seem to be coming. Though I know it will...
I feel myself annoyed at people who are trying to make it seem more positive. Does anyone else get that way? I almost feel like they are trying to minimize what we are going through when in my head I know they are probably just trying to make me feel better. Yet it almost makes it worse.
Sorry to be such a downer...hoping my roller coaster ride takes an upswing soon.
Hoping all the other roller coaster rides out there are doing well!

Thank you for your concern.

Waiting to breathe — Wed, 11 Jan 2012 21:35:58 -0500

Thank you for your concern. I have been on computer about 15 to 18 hrs a day. But I am a late night person. I do sleep in. I have dound great comfort and support oline. I had never been on a blog or posted anything online but I have found myself in desperate need of support. This is the first time I feel that my large family is not showing support. I have been lucky. They have always been there no matter what. Everyone has their things going on in their life. I am not angry, just a bit lost. I major concern is when my husband isn't feeling well. I can't cook. He does all that. Hope I don't make him sicker by cooking for him or maybe we might strave. Well, we domlivein Vegas, so if he is up to it we could just do buffets (yuck). Today, I have had go focus on my puppy, he got neutred and he as had a hard day.
I am so grateful that I have all of you to turn to. I believe I will find my way, it just easier knowing I can turn to all of you for comfort and information.

2:00 am

eihtak — Tue, 10 Jan 2012 13:37:55 -0500

I see you posted at almost 2:00am.....don't forget to take care of yourself!!! I have learned we are no help to others (husband) if we are absolutely exhausted ourselves. Sometimes in the middle of the night I too will get up and do housework or go on the computer, but make sure you are getting sleep too. MM is a wild ride, I keep telling myself I always liked to go to the fair and this is some rollercoaster. The doctors usually tell you the worst case that could happen, that way if it does go that way they have prepared you, but from talking to people we have met, it usually is not the worst case!!!! So that is something to keep in mind. My life is also crazy right now full of ups and downs but just talking on here seems to help a little and make me feel not so alone...keep in touch, you are in my prayers.

Thank you for your outlook.

Waiting to breathe — Tue, 10 Jan 2012 02:59:51 -0500

Thank you for your outlook. I can't imagine what you n your family have been through. I know hearing from others who "get it" we will find our way through. Knowing that it may be easier then we are thinking, helps a lot. Today was rough but I have to adjust to the fact that with MM it's going to be a wild ride. I get the feeling that there lots of ups n downs. I hope u don't mind if I turn to all of u when it's to hard alone. Thank u again. Plz email if up to it. I do my beat to return support where ever I can.

Thank you for your outlook.

Waiting to breathe — Tue, 10 Jan 2012 02:58:36 -0500

I am so glad to hear from

Waiting to breathe — Tue, 10 Jan 2012 02:49:14 -0500

I am so glad to hear from you

I am sorry that your family is going through. I get the feeling that no where you are on this MM path none of it is easy. I admire your restraint. I don't think I could handle not asking ?s. I so upset because the Dr didn't give 10 uninterrupted time. We were prepared for conformation of MM. But they said he was in the beginning stages then when bx results came in the oh no he had this along time n he is in the end stages 3B. We were told 2 weeks before his kidneys were in the normal range (I think Dr said it because she wanted off the phone n did like that I was not expecting her medical run around). But 2 weeks later kidneys are functioning less about half. So, that is what floored us. This his major health he already had, they have concerns. But yet didn't explain what her concerns are. She said we will talk day of chemo. I doubt that they have a schedule. I tried to book an appt before day of chemo to review options n ask ?s. They said no. They don't have any open spots. But the chemo nurse can type ?s into computer n the dr will get them in "real time". Which explains why we didn't have her attention.
Today we had to get a letter from the Dr. That states his Dx n the outlook. We are lucky that we will not have to worry about coming up with all the money for his treatment since he is a Vetran. (I would like to run his dr down with my 1 ton truck, she is so uncaring n doesn't give a crap) but at less we don't have to panic about money for teeatment. But seeing that letter ripped us apart inside. I think my husband just got pushed out of his denial. It been the hardest day yet. I feel bad crying on n off today in front of him. I don't want him feel even worse because I m upset. I did have to leave the benefits office because I started to cry when they were asking about funeral plans n they said end stage one to many times. I had to step out, so my husband started to tear up because I was crying. Anyway, guess I am one rambling. I would love to hear your whole story. My email chiroTamy@yahoo.com. Feel free, I welcome someone who understands .

Thank you for being there. I really needed thodse kind words. God bless!

I am so glad to hear from

Waiting to breathe — Tue, 10 Jan 2012 02:49:12 -0500

I am so glad to hear from you

Thank you for being there. I really needed thodse kind words. God bless!

You WILL both make it

eihtak — Thu, 05 Jan 2012 22:03:48 -0500

Hi, and so very sorry you have had to find this site, but I hope it is a help in getting through this for you. My husband was diagnosed about 2.5 years ago with Multiple Myeloma at 53 yrs old. His original treatment was also chemo for about 4mnths every 3 or 4 days. He handeled it well and we learned a lot about different kinds of chemo and that often it is not the nightmare you may imagine. Unfortunately his cancer is very aggresive and after the 4 months he needed a stem cell transplant. The doc we were referred to is Dr. Hari at Froedtert Hospital in Milwaukee ( this is his specialty ). We live about 3 hrs from there but made several day trips and then made arrangements to stay for a couple months during the transplant. After a few life changes like always being aware of using hand sanitizer and lysol (lol), things were not nearly as scary as we had thought. But....then I was diagnosed with Stage 3 Anal cancer last Feb. I finished my chemo and radiation last April, and though it was hard for me, I am getting back to life whatever that is these days. One would think that to be enough but no....my husbands cancer flared up again and in Dec. he had a full bone marrow transplant. This time was a bit harder and the prep chemo for both transplants is almost worse than the cancer its self. He is out of the hospital now but we are in the area for a couple months again. I am still waiting to have some tests of my own done, but we are both thankful for the life we have. We have 5 children and 5 grandchildren that we plan to watch grow up!!!! I can imagine you feel like you've been hit by a truck, but you will see, it will work out. Be patient, things will fall into place. Out of no where answers and help will come. My husband also wanted to think it would just go away or something in the beginning, but.....it doesn't. Tho it is said to be incurable, we have met several people (mostly men) that are LIVING with this in a remission state for many years. Some live with a maintenance chemo (pill, or IV) like once a week for a while, but usually a very low dose with little side effects. Please stay calm, you will feel better as you get more information, and please keep posting. You will be in my thoughts and prayers.

You will breathe again

MMSpouse — Mon, 02 Jan 2012 08:26:20 -0500

Hi, I am very new to this as well. My husband at 47 years old was diagnosed with MM on May 6th 2011. I thought I would never breathe again either. The world was just spinning around us so fast that I didn't know what to do. He started aggressive chemo on a clinical trial in June. He went twice a week for for infusion for two weeks then had a week off and then started again for 8 cycles. His last infusion was December 23rd.
I am sure you don't want to hear our whole story, but I guess my motivation for writing is to tell you that you will breathe again. You will smile again, and you will find the strength to move forward. I found my strength in my husband. Though there were times I was so angry at him. When we went from each various doctors appointment to test, to infusion he didn't want to ask any questions. My mind was racing with questions but out of respect for the way he needed to handle it I didn't ask, unless I asked him first. The hardest part was when the doctor asked if he wanted to know his prognosis and he said no. I feel desperately in need of some control over my life, but I had to respect his decision. He told me it doesn't matter, he doesn't need to put a number on his life expectancy. He needs to fight this in his way. How can you argue with that?
Anyway...I didn't mean to ramble. I feel like I could type for a week! But I just want you to know...you are not alone. Some days are easier than others, but there will be good days.

Myelofibrosis

shapecontrol — Thu, 29 Dec 2011 02:43:59 -0500

Hi Jontue22, I am reading your story. This is really amazing to hear your story. Blessing to you!

My dad was dignosed with Myelofibrosis. His age is 61. The interesting thing is that his spleen and liver is normal, only with his blood counts, especially his white blood cell very irregular, and occasionally his red blood cells and platelets low. Now we are trying ways to help him to live longer. We love our father very much. But we are at our wits, because doctor told us, there is no medication for myelofibrosis, only bone marrow transplant will help.

Thank God for your posting

dee_2011 — Wed, 28 Dec 2011 11:08:45 -0500

I am going thru the same thoughts as you. My husband now age 52 was diagnosed with MM 7 yrs ago. I have tried to find someone to talk to because I too do not know what to expect. I am so confused and feel so helpless trying to help him. He us going now thru radiation for a tumor on his head, neck and knee. the oncologist has already told me he has a few months at the most. Why do they keep talking him into doing other stuff. I too feel sometimes are we just keeping the drug companies going and the doctor richer, while we watch our loved ones go thru the pain and agony of this disease? He now has spasms really bad. he just called me here at work and said "I just had a spasm in my hand and dropped my milk" I feel so helpless.

Revlimid

gtaa_driver — Thu, 15 Dec 2011 22:53:28 -0500

I just celebrated 2yrs since my stem cell transplant. I am on a 10mg maintance dose and also have the same side effects. My doctor has me on 75mg of Lyrica 3 time a day to combat the side effects. It helps but I sometimes have a bad day if I overdo myself and have to be careful not to get too fatigued.

Revlamid

gtaa_driver — Thu, 15 Dec 2011 22:39:53 -0500

Before I went on Midicare this past June my insurance paid a majority of my medication. I paid a co-pay of $36. It is now $49 on Medicare.

Revlimid

arky70 — Thu, 15 Dec 2011 20:39:31 -0500

I completed a 4 year clinical trial begining in November 2004. As part of the trial I underwent two stem cell transplants and three years of maintenance chemo. After the trial ended in November of 2008 I began taking a new chemo drug, revlimid 5mg daily. I take my Revlimid at bedtime per doctor's instruction. I do have side effects: cramps in legs and feet and also in my hands. It is not clear to me which drug caused the bulk of this problem. another side effect is fatigue. I get up most mornings ready to go but by noon or shortly thereafter I feel totally exhausted. But it sure has been a good life the past few years. I am now a 7+ year survivor.

Revlamid

Carmelo2911 — Tue, 06 Dec 2011 16:29:52 -0500

Hi Jimmy....can u pls tell me if your insurance carrier pays for Revlamid.

Thanks...Carmelo