[Miss Glover]

Just diagnosed - need to talk with someone

by Miss Glover on Mon Feb 09, 2015 11:51 am

I need to talk to someone now - I have just been diagnosed with multiple myeloma and would like some comforting words, thank you. I feel as if I am on a runaway bus and don't know where to go!

[Beacon Staff]

Re: Just diagnosed - need to talk with someone

by Beacon Staff on Mon Feb 09, 2015 11:58 am

We're sorry to hear about your diagnosis, Miss Glover. I'm sure that many people here would tell you that what you're feeling is perfectly normal.

You always can post any questions that you have here in the forum, or share with others what you're feeling. That's what we're all here for.

[ClaireK]

Re: Just diagnosed - need to talk with someone

by ClaireK on Tue Feb 10, 2015 12:14 am

I was in your position this time 2 years ago. I had 5 rounds of chemo followed by a stem cell transplant and I am currently in complete remission.

There is so much your body is going to go through and you will have bad days and good too. Nobody can tell you how to feel emotionally or what you need to feel – everyone is different. That said, I will say that this forum has been a godsend. Use it.

I wish you all the best.
Claire

[Tracy J]

Re: Just diagnosed - need to talk with someone

by Tracy J on Thu Feb 12, 2015 12:29 pm

The beginning is so frightening and anxiety-producing. This has tested us like nothing else in our lives. But I have found that, although the beginning felt truly terrible, it does get better somehow. I think it's getting a plan of action in place that made me feel better. It is still awful and I still cry an awful lot, but I no longer have that whole sweaty-palm, fight-or-flight physical feeling I had in the beginning, seemingly all the time.

Hang on.

[K_Shash]

Re: Just diagnosed - need to talk with someone

by K_Shash on Thu Feb 12, 2015 1:47 pm

Miss Glover,

I completely understand your shock and dismay. I was told about my myeloma the day before Thanksgiving 2014 and had very little details.

You have posted on one of the very best sources of information and will get more practical feedback and references to the latest research and treatments on this website. I would urge you to register and get the full benefits of the resources this community has to offer.

As many have stated in the various discussions here, knowledge is power in this fight against our common enemy, the multiple myeloma monster. I also find learning more and more about the related information to be a very useful way of staying objective.

You have not mentioned any details and your tests may be underway before starting any treatment. My understanding is that, depending on all your risk factors and the 'stage' of your myeloma, you may be very lucky and be a low-risk patient and achieve a complete remission in a few months. This would be like me, in that I am responding very well to the induction therapy of the RVD treatment. I was diagnosed to have a 'trisomies only,' standard-risk, IgG kappa myeloma). However, this discovery took almost three weeks after the initial myeloma diagnosis.

Everybody's myeloma is different and so is the individual's response to treatment. You can see some very encouraging stories of patients here that had their myeloma discovered in 1987 and no relapse after the then chemo for 25 years! Many such accounts of long surviving myeloma fighters have been posted recently.

Also, all the oncologists and myeloma experts agree on one thing: currently there is a substantial research and Phase 2 and 3 trials of almost a dozen new promising drugs that can turn the tide against this cancer. UCSF website states: We are not far from 'decades' of overall survival. I am counting on it!

I hope you will too and soon.

K_Shash