[Mrsgroovy83]

young and newly diagnosed

by Mrsgroovy83 on Mon Oct 01, 2012 2:47 pm

hey guys,

I'm new to this website and am looking for some support. I'm a caregiver for my husband who was recently diagnosed in late august. We are both young (he's 36 and i'll be 30 in january) and are kind of floored to find out he has cancer let alone something that's not really curable. From what I've read up on this it's rare for someone that is as young as my husband is to contract myeloma. So, i guess what i'm on here for is help/support and finding out about updates and what's coming in the future for patients. Not going to lie, I'm totally freaked out and wondering what our future holds....trying to be strong for my hubby mainly but also for our kids (we have 3) and the rest of the family but there are days when i honestly don't know how to handle all of this! He's currently on a dexamethasone regimine right now until we can get on insurance; which hopefully will be no later than this Friday. Anyone dealing with their loved one on dexamethasone? All i can say is what an emotional rollercoster ride this is!!! YIKES. i knew what to expect through a ton of reading but when all these emotions actually come around Iam so not prepared for this! So any and all help, support, and prayers we can get from you guys would be greatly appreciated!

many thanks!

[Christa's Mom]

Re: young and newly diagnosed

by Christa's Mom on Mon Oct 01, 2012 6:26 pm

Hi Ms. Groovy,

You're right, your husband is young for this, but as you read through the Forums you will find that there are others here that are much younger than the average. But regardless, all of us who are caregivers know what you are feeling right now, and all I can say is that it does get better. Yes, the Dexamethasone can be hard to handle - most people seem to time when they take Dex so that they can take advantage of the highs/excess energy, and sleep or not need to be productive as it wears off.

What is the plan for your husband once the insurance question is worked out? For a lot of people, once they have gone through a few rounds of treatment, some of the issues caused by the myeloma start to resolve and they start to feel better.

Lyn

[Beacon Staff]

Re: young and newly diagnosed

by Beacon Staff on Mon Oct 01, 2012 7:35 pm

Hello Mrsgroovy83,

We're very sorry to hear about your husband's myeloma, but we're glad you've found this forum.

Dexamethasone, in all its glory, is a topic that's been discussed very frequently here in the forum and in a number of articles written by the Beacon's patient columnists.

Here's a link to forum discussions that have focused to one extent or another on dexamethasone: http://bit.ly/QxYcHG .

Also, here are some patient columns that deal with the topic:

https://myelomabeacon.org/headline/2012/05/15/me-vs-mm-agent-d/

https://myelomabeacon.org/headline/2012/07/03/seans-burgundy-thread-dex-man-walking/

https://myelomabeacon.org/headline/2012/02/23/manhattan-tales-steroid-adventures/

All the best to you and your husband.

[Mrsgroovy83]

Re: young and newly diagnosed

by Mrsgroovy83 on Tue Oct 02, 2012 5:02 pm

hey sorry for taking so long to respond.....but thank you for your posts...

Lyn: we are supposed to start a dex, Revlimid, Velcade regimen for 9 weeks since his kidney functions have improved from 30% to 60% functionability (if that's even a word). it dropped from 12 weeks so i guess that's pretty positive there. the dex regimine right now is done on friday nights so he can get adjusted to everything over the weekend. it seems to help him during the week especially since my husband is working. his doctor has been pretty positive about things and i hope it continues this way. i have to say we were very blessed to have his doctor come on board. he lets us text him if we have any questions or concerns and is very thorough with each visit. What's your story?

Myeloma Beacon, thanks so much for the sites for dex...it's been super helpful

[Ger]

Re: young and newly diagnosed

by Ger on Wed Oct 03, 2012 5:00 pm

Ms Groovy83;
Hi I don't know much about Dex. They did give it to me for a couple of weeks. 1 week before radiation, then 1 week during.
I'm 43 with what my Dr was thinking was a solitary plasmacytoma which he thought was going to be cured by radiation. Well my M protein didn't go away (although it is very small 4g/l). I am in more pain now then before so they are doing bone marrow aspiration and another MRI. He is thinking it is smoldering myeloma with a plasmacytoma now.
Anyways, I am 43 and have 3 young children. I understand the pressures that come with that. Kids can ask some pretty tough questions, ones you don't always have the answers to. I try to stay up beat with them at the same time being honest and let them bring the questions to me as they have them instead of overwhelming them with info they are not ready for.
I just want to say hang in there, be there for your husband and your family, and the best of luck to you.

[Dr. Ken Shain]

Re: young and newly diagnosed

by Dr. Ken Shain on Wed Oct 03, 2012 11:00 pm

Best of luck to you and your Husband Ms Groovy83. It sounds as though you (your husband) is getting excellent therapy- RVD is an excellent regimen. It is generally well tolerated and has excellent responses. I am also glad to hear that your physician is so engaged in your care. So, it sounds as though you are well taken care.

I know that you were asking for fellow myeloma patients/caregiver advice. I just want to emphasize, however, that at your husband's young age (but really at any age), that your husband should be receiving care from, or have seen, a myeloma specialist -- for appropriate management of your disease and to ensure that you are aware of all the options open to you in future therapy.

Again, best of luck.

[lys2012]

Re: young and newly diagnosed

by lys2012 on Sun Oct 07, 2012 12:52 am

Hi I just wanted to say hi. I was diagnosed at 32, my husband (we were just dating at the time) really stepped up and helped me get through my induction and stem cell transplant (moved us in together, drove me to all my chemo, did groceries when I had crazy dex induced sweet cravings) and we just moved into our first house, got th keys on our first anniversary! So life goes on! I am in remission since my first transplant in summer 2010. We are thinking about kids / family. I feel he is in my life from higher orders. He was a great caregiver, maybe not the best cook though! lol. (expecially with chemo induced food aversions)

[LibbyC]

Re: young and newly diagnosed

by LibbyC on Sun Oct 07, 2012 7:38 pm

Hi Ms Groovy,

I was diagnosed 3 years ago and have been on dex and prednisolone a number of times. Sometimes only once a week, 4 x a week or daily. The food cravings I had were unbelievable and I put on 20% of my weight (I am still trying to get it off). If I only had to take dex once a week I would get up at ~3 am have a hot milk drink take my dex (coz its supposed to be taken with food) and go back to bed. I would then go back to sleep b4 the dex kicked in but would wake up starving. I would then have a large high fibre low GI breaky cereal to try and keep me full. Taking the dex early in the morning would mean that I would get a better sleep the next night. This worked for me and I didn't put on any more weight. Hope this helps and good luck.

[wanda and dan]

Re: young and newly diagnosed

by wanda and dan on Sat Oct 13, 2012 10:58 am

hi miss groovy, my partner dan was diagnosed july this year, his only 41, i was also freaked out, but always positive as ii'm sure you are. my dan is stage 3 myeloma, with 4 tumors. his always in pain. his had 4 cycles of Velcade and dex, but with no response, were waiting now for a biopsy, then we think he will be put on thalidomide chemo. i know what you mean about dex, made dan a little depressed and he craved chocolate. he would get up and raid the fridge...lol..

best of luck with your husbands treatment, keep strong, this cancer is treatable, xxx

[Marie64]

Re: young and newly diagnosed

by Marie64 on Sat Oct 13, 2012 3:59 pm

Hello Ms. Groovy. I am sorry to hear about your husband's diagnosis. Yes, Dex does provide a "wonderful" roller coaster ride. My husband is also diabetic. The steroid made his blood sugars go sky high. There were times when his meter just read, "High". The mood swings were also extreme.

My husband sees his regular oncologist and a multiple myeloma oncology specialist. When we told the specialist about the nasty side effects, she broke his dosage into 2 smaller doses each week instead of one large one. This seemed to give a slight reprieve.

Prayers to your family as you begin this journey. Just take it one day at a time.

"I can do all things through Him who gives me strength." ~ Phil. 4:13