[Jayhawkmom]

Is there hope?

by Jayhawkmom on Thu Jul 18, 2013 6:08 pm

I'm just feeling very uncertain today and wondering if you all on here can help. I have mentioned before that my husband's oncologist has never really discussed a prognosis with and like to focus on treatment. I had people on this site suggest we get a copy of his medical chart and we did. I have learned a lot more, however, after reviewing it all, i am more scared than I was before. It does appear that the chemo is working, I'm just afraid that it's too late. Can it be too late? He has one more round of chemo before we are to do a stem cell transplant.

There are a few things that really scare me. At the end of the doctor's transcribed reports, it alwasy says , "risk is high". The CT scan results shows: innumerable lytic lesions throughout the osseous structures. Lesions are seen w/in the medial clavical heads, right greater than left. there is lytic destruction of the 9th rib posteriorly in the arear of the pleural mass. Within the 9th rib laterally, an expasile 3.5 x/2.2 cm lytic lesion is seen. There is a tiny healing nondisplaced 10th rib fracutre. Innumberable lesions are seen thourgh the spine, rib cage, scapulae, proximal humeria, and stenum. There could be disruption of the anterior cortex of the left posterior 7th rib. On sagittal reformatted images, no definite evidence of acute compression deformity is seen within the spine. Diffuse osseous lesions are again seen. .

on 5/8/13 his beta-2 microglobulin, serum was 6.1
kappa/lamda ration:
kappa light chain, serum 1.00
lamda light chains, 25.60
kappa/lamda ration, 0.04
total protein 10.50
albumin 4.87
alpah-1 globulin 0.36
alpha-2 globulin 0.89
beta globulin 0.85
IgA by ummunofixation 8
gamma globulin 3.73
igM by immunoficxation 9
igG by immunofixation 5000
it then says m-spike in the gamma region. the monoclonal protein peak accourt for 3.59 g/dl of the total 3.73 g/dl of protein in the gamma region.


ON 7/5/13 albumin 3.75
alpha-1 globulin 0.55
alpha-2 globulin 1.33
beta globulin 0.81
igA by immunofixation 122
gamma globulin 0.95
igM by immunofixation 89
igG by immunofixation XXXX
m-spike 0.63 grams per dl

Anyway, I'm sure there are lots of people on here who have been this sick or way sicker. I just want some hope I guess and want to be reassured. I would also like to know the truth if it doesn't look good. Anyway, thanks for any responses you can give.

[Jayhawkmom]

Re: Is there hope?

by Jayhawkmom on Fri Jul 19, 2013 9:50 am

Can I take the lack of responses to mean it is really bad? We have 4 kids ranging from 16 to 9 months. I just need to prepare myself for what is to come. Please respond if you can interpret these results and have an opinion Thank you!

[Russ]

Re: Is there hope?

by Russ on Fri Jul 19, 2013 9:54 am

Jayhawkmom,

I am not surprised that none of the doctors want to talk prognosis – In reality, given that this disease is so different person-by-person, they do not truly know, particularly so early in the game. The key question becomes, “How is one responding to treatment?” That being said, it looks like your husband is responding well, which is fantastic!

Have you spoken to any other docs, particularly myeloma specialists? It is always a good idea to get differing opinions on your chosen course. If it were me, I would want to make sure I was in CR or as close to it as I can be prior to undergoing the transplant. This might mean, of course, an additional cycle of two of chemo or radiation for any external tumors, but knocking the disease back as far as possible before transplant seems to lead to much deeper responses and longer outcomes. Particularly true if the individual is responding well to the induction. (And as it turns out, it IS what I did in my case…)

So, with all of that, remember that there is always some hope.

God bless,

Russ

[Jayhawkmom]

Re: Is there hope?

by Jayhawkmom on Fri Jul 19, 2013 11:18 am

Thank you Russ. I appreciate your response. Unfortunately I'm not sure how to get a second opnion from a myelmoa specialist. My husband was diagnosed withouth health insurance and his medicaid is still pending. We have felt very fortunate that he is receiving treatment w/out insurance. I think the doctor we have in Topeka is the closest thing to a myeloma specialist we have here. He specializes in hematology/oncololgy and did part of his education at UAMS. We have spoken to a dr at the bone marrow center for Kansas University Medical Center and he agreed with the treatment plan our doctor had him on.

I don't know. I realize that with this disease it is hard to give a prognosis. I guess I am just wondering how bad it is. Is treatment and remission possible at this stage in the disease? I just wish I had more answers to prepare myself and my children. My husband doesn't want to focus on that and only wants to focus on treatment and getting better. I on the other hand just want definitive answers. I guess that probably isn't possible though.

[BuffaloPat]

Re: Is there hope?

by BuffaloPat on Fri Jul 19, 2013 4:28 pm

If anything, I can offer a piece of "hope." I was stage IV multiple myeloma in 2003 with "innumerable lytic lesions." Nearly ten years later, I remain....still have the lytic lesions, but they do not worsen. After a great bit of treatment, the disease retreated into remission (8 years). Every case is different, but I can say that things are often not a grim as they seem at first.

[Jayhawkmom]

Re: Is there hope?

by Jayhawkmom on Fri Jul 19, 2013 4:58 pm

That is exactly the kind of thing I needed to hear! Thank you so much. I hadn't run across any other cases like that on here and wasn't sure how commen it was or if the other people here that were in remission were at that stage or the early stages. I appreciate your response so much. I do realize that everyone's case is different and the responses they have to treatment are different, but just the fact that your case seems similar and you are doing well gives me a great deal of hope!

[Ulrika]

Re: Is there hope?

by Ulrika on Fri Jul 19, 2013 5:19 pm

I also want to encourage you...not that I am an expert (my husband was diagnosed multiple myeloma in march this year at stage one with only 3 lesions) but a friend of mine was diagnosed with Myeloma last October with one of the worst cases our cancer clinic had seen - he is now post SCT and back at work! his prognosis has now changed drastically.

from what I have been told staging is not as defining with multiple myeloma as with other cancers and sometimes even if it takes longer to get the results normal levels it can stay that way for longer! In other words it it good to remain hopeful and positive because a prognosis is just a calculated guess - and multiple myeloma seems to defy prognosis regularly!

We also have grand children and that is more reason for us to hope - they love their grand dad and they are so young still so they need him around a lot longer.

So hang on to your hopes stronger than any prognosis... believe for the best outcomes and think more about your husbands future than the logistics. (I tell myself this all the time!!)

[CamsTeee]

Re: Is there hope?

by CamsTeee on Fri Jul 19, 2013 6:52 pm

I was diagnosed in Feb. 2013 and have several lesions also. I had to have a rod and plate put in my L upper arm before I got radiation because the radiation oncologist was afraid the bone would break if I did not have them put in. I also have a few sacral lesions and a large one on my 9th rib with a fracture.

I have the most aggressive form of multiple myeloma with chromosome involvement. I had a stem cell transplant done in August of 2012 and a 3 month follow up bone marrow biopsy in November which came back cancer free. I will have to remain on Revlimid the rest of my life but have heard so many stories of longevity with multiple myeloma patients I have decided to stay as positive as possible and live my life as normally as possible. It does seem that multiple myeloma takes a path of it's own with each person. The high risk group is supposed to be for afro-american males over 65. I am a 54 year old caucasian female.

I can understand your concern and frustration as I have gone through the same thing. I am a nurse and have even asked doc friends of mine and they same thing. I had been following a childhood cancer patient who stated her outlook was to 'just keep swimming' and that's what I intend to do. I plan for the future like anyone else...I already have the disease, cannot change it, so I accept things and deal with things as they come up,but don't stress over things I can't control anymore...and just keep swimming!

May you and your family be blessed and may you be able to find some peace of mind! I will add you to my prayer list!

[Frank's wife Vickie]

Re: Is there hope?

by Frank's wife Vickie on Fri Jul 19, 2013 7:30 pm

My husband was diagnosed in January of this year. He was determined to be a stage 3, based on quite a few bone lesions, as well as a more aggressive form of myeloma, known as Iga. I guess IGg is the more common, less aggressive. He has had a great response following 6 months of "induction therapy." The sct is the next step, however, he is 70, and is on the fence about going through it. Believe me, that fact alone keeps me up at night, as I truly believe that the transplant deepens the remission. However, if he does "pass" on the sct, perhaps he can manage with life long treatment.

My point is that like you, I was terrified in the beginning. The terror increased hearing that his was rather advanced and aggressive. Now I realize we only have 6 months under our belt, but his doctor has made the same statements as posted here, about myeloma being a different cancer where the staging may not have too much impact. Also the aggressiveness again of this disease means less than how the individual responds to their treatments. I know exactly how you are feeling, but I promise you that with all the novel treatments available for myeloma patients, the prospects for long term prognosis have vastly improved. My husbands oncologist has never mentioned prognosis in his case either. In part, I think it is too hard to gage each individual, because the results are quite varied.

[Ted E]

Re: Is there hope?

by Ted E on Fri Jul 19, 2013 9:15 pm

Keep positive. Don't worry too much about the prognosis. It's always OK to take care of business, but don't be afraid to plan for a positive future! I see many good comments in response to your post and there is some very good advice in those post. The best I could give would be to see a myeloma specialists, as previously mentioned! Most of the stats are dated so I would not pay much attention to the research you may find, or see, on the internet. Focus on the good, ignore the bad! Today... is a Good Day! We started our journey in 2002. Chemo, stem cell harvest, more chemo, more chemo, then a transplant, remission, maintenance, etc. 6cm lesion at S1, L4, L5. (It took me about 5 years to understand that I was going to live) It was a roller coaster of emotions.... still is, at times. My perspective has changed, for the better, on almost everything. Take it one day at a time and keep moving forward with a positive attitude! All our best to you, your husband, and your family! ......There is always hope!

Life is short... eat dessert first!

Ted

UAMS/MIRT 2003
Little Rock, AR