Judyinthesouth

Hi Judy
I know we have connected on this site at some point, I have you as someone I am following. But I have read several of your more recent postings and realize we really have a lot in common. I have been off the site for awhile and really need to connect with others. I too was diagnosed quite awhile ago, August of 2011. I’ve just turned 70 but I am lucky I do have kids who threw me a wonderful party. They bless me every day. After loosing their dad to pancreatic cancer they are holding their breathes.
I also had a SCT and did not go into total remission. I’m on Revlamid and seem to react well to it. I have compression fractures in my back so between the Revlamid and pain meds I am VERY TIRED ALL THE TIME.. I tend to stay home a lot as I don’t have the energy to go anywhere. I’m from North Carolina so also am from the south.

Somehow I lost the last bit of my post. Don’t remember what I said so will just say I hope you are doing well with the treatments and that your numbers are improving. My best to you and keep the faith and know that there are many of us on this site that are following your journey.

We would like to feature you and your Multiple Myeloma experiences in an article for our blog if you would be interested in doing that. All I would need is to have you type out a description of what you have been through in your treatment from the start. I will take your information and write a piece out of it. A few pictures are wonderful for the article. I'm sure you've seen some of the others we have posted over the years before. Let me know if you have any questions and if you would be interested.

Thanks for being with us and we hope you're doing well.

If you will email me at greg @ whatnext. com I can get you more details if you need. If not, just send your completed description to me and I'll ask any questions if needed.

Judy - I think we are pretty much in the same place. I relapsed last March and have been on chemo since then. Most not really working. I also can not take Revlimid or Pomalyst any more. I'm glad because they made me miserable and don't work for me. I was on Dara/Pom/Dex but it's not working so I'm switching to Bendamustine, which is a really old one like marphalan or cytoxan. I have been having extra medullary so I had tumors in my abdomen and in my eyes/forehead area. I'm hoping a Bendamustine does the trick. Or let me know if something works well for you, please?

Hi Judy,
Just wanted to check and see how you were doing? Hope all is well!
God Bless! Janice

I hope you are doing ok now. What did they end up putting you on now?

Very sorry to hear that the MM is back. How much did it come back? Can it be knocked down with a maintenance?

Thank you for being such an inspiration to the community! You are wonderful!

Hi Judyinthesouth,
Hope your well. Had my SCT 3 years ago and also reside in SC.

I had stem cell transplant 4 weeks ago. I couldn't believe how simple the procedure was. I had it done as hospital inpatient. and I am glad I did since I live alone. I went back to my doctor today and he assured me that I was doing great. He said that I had done better than some patients that are younger than me. I must give God the credit for taking care of me and bringing me this far. Now, I can't wait to get busy with "my life" again!

I just got home from hospital on June 7th. I had stem cell transplant week before. The transplant was easy, but the after effects were rough. I have had a lot of diarhhea and not felt good. I am taking some meds since the procedure. I am still very tired all the time and I get depressed easily. I hope things will be improving soon!

Hey Miss Judy, how are things going?

I will be having real high dose of chemo this week and then stem cell transplant. I am anxious to get it over with..but, I am a little nervous. I understand I will be in hospital for about 3 weeks. Has anyone had this experience recently?

Hang in there Judyinthesouth. Time is precious. Enjoy your 2-3 months the best you can. Eat all the fresh fruits and Vegis you can. Dig in the yard, play with your pets. Do all that you can before you can't enjoy those things for a while. Patience is a virtue. Will keep you in my prayers.

Hey Judyinthesouth. How are you doing? Leg cramps stink. I was at a Livestrong program last week and some of the ladies were talking about the same thing. The one lady said if you put a bar of soap in between your sheets, down by your feet, the lanolin in the soap is supposed to help. Sounded a bit goofy to me...but hey, she swears by it. Can't hurt to try hu? Hope you are getting stronger and the cramping stops soon. I get the cramps in my feet and toes.

Hi Judy
One suggestion I got from a nurse when I had my catheter put in before my SCT about keeping the catheter/port dry was to cover it with press and seal. I found out I am allergic to certain types of adhesives used on bandages and dressings which included the covering the hospital used when I took a shower. Press and seal worked wonderfully.
Any word on your SCT? Now that I have retired I have more time to be on this site and am enjoying asking and answering questions. Hope all is going well.

Dear Judy, My name is Cathy and my cousin Norm,46 yrs old,single father of a 10 and 12 yr.old, is in the last stage of Multiple Myeloma.Was diagnosed in July of 20212.We both are very close and my relationship with him is one that we share everything with each other.My cousin Norm recently had a port put in going into his 4th round of chemo and likes it much better as he did not have one in the others.So I pray your port will be successful an less stressful..Sincerely Cathy Winters

I remember getting my chemo twice a week and your right it can really wear you down. I tried to stay awake to do fun things with my husband but, it was so hard at that time. Just do you best and look forward to the time that you'll feel better. you will feel better it just takes time. I agree with barryboomer force yourself to get out and do things, but rest when you need too and don't feel bad about it.

Judy,
I would love to talk to you. If you would like to talk, I will send you my number.
Janice

Problems answering your question on hair loss in the usual way so... I only lost my hair when I had stem cell transplants. It was about day 14 that all of it was going. It has grown back though a bit different than it was before treatment.

Hi Judy
I am also 66 and was diagnosed with MM in August of 2011. I had velcade then revlimid until my counts went down and had a stem cell transplant at UNC June 1 of last year. Am now on a maintenance dose of revlimid and so far am doing well. My only issue is by the time it was diagnosed I had 5 compression fractures in my back. Fatigue is from both medication and the MM, at least it was with me. everyone reacts differently to medications and so far I have done well taking everything they have given me. The SCT went well and wasnt as scarey as I thought it was going to be, intense but not frightening. Stomach issues also come with the territory of the MM and meds. I live near Pinehurst, NC so i am in your "neighborhood". It is hard giving up our "life" to the disease, I was a skier, gardener and boater and was working out 4 times a week at the center at our hospital. But, i am here and enjoying my kids and grandkids so that keeps me positive. that positive outlook really helps with the disease. My transplant Dr at UNC has been very encouraging and they are coming up with new drugs all the time to treat this so i stay right with him and his positive thoughts. Best of luck with the treatments!!! If you have questions all of us on this site will happily answer them.

Hey Judy! I was diagnosed May 2011. I received velcade and cytoxan chemo weekly for over 1 year, but no radiation. I had 2 stem cell transplants last year which put me into remission. (Thank God!) My team at BMTC in Atlanta is awesome!

I have only had chemo, no surgery and no radiation. My doctor does not get ahead of himself. We deal with things as they come along, which works well for me. I like to stay in the day and not obsess about the future. Do you work? I am still trying to work although I have not made a whole week since diagnosis. I have only been on chemo a month, so I am really new to this process and to this Board.

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter

My prayers for you and your family are already on the way. At 64, I am slightly younger than you. I am approaching five years after diagnosis that said 2 to 3 years. I strongly suggest you stay positive and stay away from reading about our temporary visitor on the internet. We are each unique and have our own path though we share a strong faith. May I also suggest www.caringbridge.org for a free way to keep friends and family notified. You can read my story there at http://www.caringbridge.org/visit/paulsimoneau
I am happy to share and answer any questions. God Bless you to overflowing and beyond, Paul