[dishevelled]

Is this normal

by dishevelled on Mon Apr 01, 2013 3:59 pm

I had an apt for Thursday to get my bone marrow biopsy results they did because if amonoclonal protein and I've been sick. They called me 3 times today to have me come in in a few hours. II'm scared. I don't know if they're calling me early because somethings wrong?!

[Cheryl G]

Re: Is this normal

by Cheryl G on Mon Apr 01, 2013 5:38 pm

Everybody's case is different, dishevelled. However, if the doctor's office is calling to ask you to come in sooner than expected, there probably is something important they need to discuss with you. It's anybody's guess what it is. But it's probably important.

So, even if you're scared, which is perfectly natural, I think the best thing to do is go to the doctor's office and hear what they have to say. Whether the news is good news or bad news, it won't change or go away just because you don't hear it. It is also possible that the news is urgent, which is all the more reason you should go in to learn what it is.

I wish you lots of strength and, above all, lots and lots of good luck. I hope there turns out to be no reason for any serious concern.

[Multibilly]

Re: Is this normal

by Multibilly on Mon Apr 01, 2013 6:16 pm

I know it's tough advice to follow, but don't let your mind jump to a bunch of worst-case conclusions. It could also just be that this is the way the office normally operates.

In any case, Cheryl G's advice is right on. Just be prepared to take a lot of notes in case they are passing some new and important news on to you. If they are going to chat with you about any new development, chances are you will have a bunch of questions that you will think of AFTER the appointment. So, I'd also suggest scheduling a follow up with the doc if you do have follow up questions.

Let us know what turns up and good luck.

[neatmom]

Re: Is this normal

by neatmom on Mon Apr 01, 2013 8:53 pm

I got a similar call 3 days after my normal weekly blood work visit. I'm a stage3 multiple myeloma survivor who went thru a bone marrow transplant almost 3 years ago. Well news was levels were up did BMB cancer back, stage 1. Revlimid quit working, now using Velcade subcu in belly, Cytoxan, dexamethasone 3weeks in and I feel like crap, no energy, very queezy, but high hopes. We have to stay positive. If anyone has any ideas for energy or tummy please let me know. Thanks

[dishevelled]

Re: Is this normal

by dishevelled on Tue Apr 02, 2013 4:00 am

Thank you guys but my news was that I have multiple myeloma. Still trying to wrap my head around this.

[Louise]

Re: Is this normal

by Louise on Tue Apr 02, 2013 4:01 pm

I have served as my husband's caregiver since his diagnosis in 2009. We have experienced all of the fears, apprehensions, frustrations, doubts, and so on described in these postings. I can only speak to my observations and feelings as a caregiver.

My husband was extremely ill at the point of diagnosis -- he had been gradually declining with no diagnosis for seven months. Honestly, I didn't hold much hope for improvement, as his condition seemed to worsen before my eyes. Finally, we found a competent doctor who, after a few tests, gave us a diagnosis quickly and set us on the right track. We went to another state for treatment which ultimately included two stem cell transplants, followed by a maintenance therapy (which continues today), and he has achieved complete remission.

My point in telling this is to show that treatment regimens with multiple myeloma in today's world are good. My husband was so sick--I held little hope for him; yet right before my eyes, with sound medical care, he was able to get well. The main thing is to research and seek top notch care with a myeloma specialist. It's not the easiest road to travel going through chemo and treatment; however, the help from a good doctor/staff helps avoid and alleviate side effects with medications and sound nutrition.

Neatmom, the thing that helped my husband most with side effects from the Velcade, Revlimid, and Dex was Zophran, and he also ate yogurt. As for energy, the doctors can definitely help with that, and so can a nutritionist. My husband resisted just simply going to bed, but he soon found that sleeping and resting really helped--he also drank Powerade ION, as staying hydrated is very important.

Dishevelled, I certainly understand your thoughts and feelings on this diagnosis; however, believe me, there is really good medical treatment for what you have. As already stated, my husband was extremely sick and couldnt get around, but today he has regained his old self! Just be certain to educate yourself, ask lots of questions, and arm yourself with an experienced physician in the world of multiple myeloma. Also, continue to search forums such as this one, as you can learn lots here and find a bundle of inspiration!

My thoughts and prayers are with you! God bless!

[KrysiaR]

Re: Is this normal

by KrysiaR on Tue Apr 02, 2013 4:25 pm

neatmom wrote:
> I got a similar call 3 days after my normal weekly blood work visit. I'm a
> stage3 multiple myeloma survivor
> who went thru a bone marrow transplant almost 3 years ago. Well news was
> levels were up did BMB cancer back, stage 1. Revelimid quit working, now
> using Velcade subcu in beiiy, cytoxzin, dexamy.. 3weeks in and I feel like
> crap, no energy, very queezy , but high hopes. We have to stay positive. If
> anyone has any ideas for energy or tummy please let me know. Thanks

Hi Neatmom

I had a lot of tummy problems until I started to take Omeprazole 20mg daily - no more constipation or runs. Worth a try. As to energy, I'm also suffering with fatigue after transplant so I empathize.

Good luck!