CSN Login
Members Online: 5

You are here

SUPPORT

hopeful in tally
Posts: 56
Joined: Apr 2010

I posted a question early in October and have been disappointed to not receive any responses.  I am a breast cancer survivor and I got so much support from this website when I was going through treatment in 2010.  I returned when my brother was diagnosed with Multiple Myeloma and had a stem cell transplant to get some advice that I could share with him.  So far, I have not seen any posts.  I would appreciate any signs of support or advice for my brother who is now 50 days out from his Birthday (of the transplant).  He is tired and suffers greatly from neuropothy in his feet.  Any advice would be greatly appreciated!

babe12's picture
babe12
Posts: 103
Joined: Jul 2012

Hi Hopeful in Tally! This board seems to be quiet most of the time. I'm from the gynecological cancer board, stage 4a vaginal cancer, dx 5 yrs ago &and am all clear. I lost my mom to MM almost 10 yrs ago, she was dx late. Her Dr was treating her osteoporosis. She kept telling him her pain was different (and she was a retired nurse!) and his response was 'I'm not going to give you anything else for pain! After seeing a different Dr, she was dx the next day. It's wonderful your brother got a stem cell transplant! Treatment has changed so much in 10 yrs. I wish I had some positive advice about MM. But I do know cancer can be beat!!! I'm dealing with MGUS right now, high IGA, low IGM, which can lead to MM. I somehow have a calm about it. Tell your brother I am sending positive vibes, hugs & prayers his way. He can do this, it can be beat!!!!
Babe

hopeful in tally
Posts: 56
Joined: Apr 2010

Thank you for your kind response.  It is a lonely feeling to check on these posts every day and see nothing.  I, too received so much support when I was actively dealing with breast cancer over 6 years ago.  Your response proves to me experiencing a life chnging event like cancer DOES change some people and creates a new appreciation for life and a desire to want to help others.  Thank you again ... I wish you a beautiful...healthy future!

 

eihtak
Posts: 1429
Joined: Oct 2011

Hi, I am sorry that your brother has this challenge to face as well as hope that you yourself are moving forward in health!

I am a regular poster on the anal cancer forum as I was dx almost 6 yrs ago with stage 3b....the support and friends I have made there are outstanding! A year later I was dx with a rare breast cancer and while I only checked in on the breast cancer site minimally, I always recieved a quick and helpful response.....I still occasionally pop in there. I don't think I have ever posted here before, but when reading through, I agree.....the responses are limited, I don't know why that is???

Anyhow....a year before my anal cancer dx my husband was dx with Multiple Myeloma and he too underwent a stem cell transplant. The course of treatment was difficult and he struggled to regain his strength for several months....but he did! At the same time, my daughter-in-laws mother was dx with Multiple Myeloma and she too underwent a stem cell transplant. While she found the ordeal difficult as well, somehow she always seemed to have more energy, appetite, etc. than my husband (maybe its a female thing, lol)

The hospital where my husband had his transplant is several hours from where we live so meant a lot of time traveling back and forth and right after the transplant meant staying in the area for a bit. I remember coming home while he was in the hospital and feeling like I needed to steralize the house from top to bottom.....I bleached things till my hands were raw, and threw out or gave away plants and flowers that I thought would carry a risk for infection of some sort. We even gave away our dog! All this is necessary to some extent, but I drove "myself" crazy with worrying about it....don't do that!

Jumping ahead, my daughter-in-laws mom seemed to recover and other than a cold here or there is doing just fantastic today (over 6 yrs later) Unfortunately, my husbands Myeloma returned within 2 yrs and he required a full bone marrow transplant for which his brother was the donor. Again, a similar recovery period (maybe a bit longer staying near the hospital) but over all much the same as the first. This treatment worked wonderful for him and though he did catch Pnumonia a couple years ago that landed him back in the hospital, he is otherwise doing great. He hunts, plays with grandkids, and we took a lovely family vacation to Florida this year.

I will try to post often just to give you some contact and will spend some time reflecting back on tips of advice to share, but for now....know that you are both in my thoughts and prayers and let your brother know that while the road through this is tough.....there are people enjoying a "new" life after!!!

katheryn

Deanie0916
Posts: 259
Joined: Nov 2016

I am not experienced in this type of cancer but my grandpa was dagnosed with it many many years ago. By the time he was diagnosed, it has spread so even after chemo and some alternative treatment it was too late for him. But this was back in the mid 90's so I am sure that treaments and prognoses are so much improved. I have had breast cancer and just had my kidney removed due to kidney cancer so I am in the club just not this one. I am praying for your brother, he is blessed to have you helping him. God bless you!

hopeful in tally
Posts: 56
Joined: Apr 2010

I had not checked back in this website so I was pleasantly surprised when I did come back and found your responses.  Sometimes ... it is just reassuring to be "heard" ... do you know what I mean?  Thank you for all the prayers and good wishes for my brother.  He is doing well and slowly getting back to work and driving.  His biggest issue remains the neuropothy in his feet.  He has tried medications ... massages .... herbal soaks ... and has even considered acupuncture and has an appointment for some type of electrical impulse therapy.  Anyone have similar problem and found satisfactory solutions?  Again, THANK YOU for your responses ... I wish you all a beautiful holiday season and a Happy ... HEALTHY 2017!  Look forward to hearing from you soon!

 

eihtak
Posts: 1429
Joined: Oct 2011

I'm so glad to hear that although slow going, your brother is doing well. My husband also had neuropothy in his feet especially during the first year after treatment. He too tried a few different suggestions and found little help. It has gotten much better in the past sveral years, although his feet do get colder than they previously did. He will sometimes still complain of numbness or tingling in his hands as well. He trys take a daily walk and it seems that at least keeping a somewhat regular routine of physical activity has lessened the neuropothy a bit, as if he slacks off for a few days it seems to increase again.

Thank you for the holiday wishes and sending the same back, as well as wishes for health to all as we continue to move forward!

katheryn

Bobby_D's picture
Bobby_D
Posts: 2
Joined: Dec 2016

Check out this very active site for Multiple Myloma:    www.myelomabeacon.com

google search keywords by pasting into browswer window.

for example:

"neuropothy" site:www.myelomabeacon.com

 

 

 

Subscribe to Comments for "SUPPORT"