[Leepa]

Dad has myeloma, is critical with an infection - advice?

by Leepa on Wed Feb 26, 2014 9:31 pm

Hello,

I'm new here!

My Dad was diagnosed in Jan 2013 with multiple myeloma just one month prior to his 59th birthday. He has been on courses of Velcade, thalidomide and Revlimid over the past year at different stages & concoctions. He felt well enough during treatment, no major complaints.

He was a candidate for a stem cell transplant. A few months prior to his transplant we found out he had chromosome 17p deletion unfortunately. In Sept 2013 he had his transplant and after his course of really severe sickness -- "sickness by design" we called it -- he returned home a few weeks later.

Since home Dad has gone from strength to strength. He looks better and feels better. He's been like a new man!

Sadly on a follow up visit to his haematologist we received bad news - his protein count was the same as pre-transplant count indicating the transplant didn't work. In saying that, we have yet to receive the results of his biopsy, that may give a better indication?

Dad being the optimist he is said dont worry. I'll just do more chemo as instructed.

Three weeks ago we had a 60th birthday party for Dad and he was the life and soul of the party

On 4th Feb 2014, he started on a 6 week cycle (treatment twice a week).

All was going well until 10 days ago.... Dad got a fever and we brought him to A&E. They suspected pneumonia. Things have gone completely downhill. Dad has progressively gotten worse day by day. In particular his breathing. He is currently in intensive care on a ventilator. But boy oh boy is he fighting this with everything he has.

Initially it was suspected PCP pneumonia as he had all the symptoms even though he was taking Septrin. However, tonight we got word he is PCP negative. Also TB negative. We are waiting on more lab results.

What could this be? My family and I are so worried about our Dad.

He has a compromised immune but neutrophils are rising ... 0.9 when he went into ICU on Sunday now 2.8 today. The doctor has taken him off septrin after PCP neg result. This should help with the suppressed immune.

Could this be the common flu? Has anyone else ever come across this? ??

Please help.

Much love, Lee

[Eric Hofacket]

Re: Dad has myeloma, is critical with an infection - advice?

by Eric Hofacket on Wed Feb 26, 2014 10:40 pm

I just went into urgent care today with a scratchy throat, cough, runny nose, slight fever, possible ear infection and feeling really tired. These are classic symptoms of neutropenia which I have had for two years. Usually I do not have any symptoms but occasionally my white blood cell counts take a dip lower than my usual normal. This happened a few months ago and my O2 saturation level dropped to 94% and I developed sinusitis and two ear infections, so something was going on in my lungs. Nearly three weeks of Cerfuroxime finally cleared everything up and my counts came back up some.

Today a CBC was done and my neutrophils count was 1.0 and lymphocyte count was also 1.0, the lowest numbers since my SCT two years ago. I was given some antibiotics as a precaution and my oncologist ordered my 10 mg Revlimid maintenance dose stopped for two weeks. I have an off work notice for the remainder of the week, I am starting to contemplate if that is enough time now.

Seeing your post makes me realize I need to be really careful until my counts come back up. And my girlfriend has two dogs at her house. I am a little nervous right now.

[Leepa]

Re: Dad has myeloma, is critical with an infection - advice?

by Leepa on Thu Feb 27, 2014 9:53 am

Dear Eric,

Thak you so much for your reply - much appreciated. I am sorry to hear you are not feeling too well at the moment.

I can see by your profile that you are a sporty person. All that will help you through the weaker times.

My Dad played rugby from a child until his 40's. He always said keep your eye on the ball not the field. That's what he is doing right now.

The reality that we have come to see is that you can't be too careful with a compromised immune system. Funnily our family have mentioned about our concerns with our family pet too.

I hope you have a speedy recovery.

Best wishes,
Lee

[Wayne K]

Re: Dad has myeloma, is critical with an infection - advice?

by Wayne K on Thu Feb 27, 2014 12:24 pm

I had a problem recovering from my SCT a much of it was due to a low grade pneumonia. I assume they have your dad on an antibiotic. The only thing I can point out is that with suppressed immunity it seems to take longer to recover from infections in spite of the antibiotics.

Hopefully your dad will start gaining some ground soon.

[DanielR]

Re: Dad has myeloma, is critical with an infection - advice?

by DanielR on Thu Feb 27, 2014 1:49 pm

Lee
Really sorry to hear about your dad's struggles and, of course, his multiple myeloma. I too was diagnosed with 17P deletion end stage multiple myeloma in Jan of 2013. I had a severe systemic infection that necessitated an 11 day hospital stay and some of the most potent antibiotics known.. I am 6'1" and weighed 125 pounds when I left the hospital.

No one expected me to live. Despite that my Dr. put me on VRD and by May I was strong enough to schedule a SCT. I'm about your dad's age and I too had a very rough go post Transplant, but in early July I was released from City of Hope and returned home.

I was extremely grateful my COH Dr. had accessed a large clinical trial result from Europe that indicated that Velcade alone was the best post transplant treatment for 17P deletion multiple myeloma patients--grateful because of fewer side effects, but extremely grateful because the cost was dramatically less. Then too, the protocol has worked. My numbers have remained good. We've had to just let my bone lesions and fractures fend for themselves as I cannot tolerate any of the bone Meds.

My energy levels have never returned to pre-transplant levels much less normal levels. I have remained very susceptible to infections and I just don't seem to be able to discern when I've overdone it. As a result, about 8 weeks ago I came down with some kind of bug. After two rounds of azithromycin (a broad spectrum antibiotic) and no improvement--in fact my cough had gotten so severe that I had to resort to a codeine based cough syrup (I don't do well with narcotics) so that I, my wife, and the neighbors could get some sleep. My Dr prescribed Levoquine (not sure I spelled that correctly but it's a very potent AB).

Perhaps my greatest struggle has been accepting that I can no longer do whatever I want whenever I want. I need sleep and I need to just rest a lot more. It was another 2 full weeks before I could begin to take in a full breath without a coughing fit. I am just now beginning to feel like I'm getting back to normal--whatever that means these days.

All of this being said, you had asked for advice and, I'm sorry to say I don't have any. My hope is that my struggles serve as some measure of hope and comfort.

Aloha
Daniel

[Karen14]

Re: Dad has myeloma, is critical with an infection - advice?

by Karen14 on Thu Feb 27, 2014 10:19 pm

Daniel,

I also have 17p deletion. My doctor put me on Revlimid after SCT. (Dr. Popplewell at COH)
Could you tell me the name of the study about Velcade? What doctor do you see at COH?

Thanks,
Karen

Leepa,

I too was in hospital after my transplant with infections. We just have to be careful about infections because we can't fight them off as well.

Karen

[Leepa]

Re: Dad has myeloma, is critical with an infection - advice?

by Leepa on Thu Feb 27, 2014 11:03 pm

Thanks so much everyone, thanks for all your advice and kind words. You're all to kind and I really appreciate it.

I am delighted to say things are really looking up for Dad. He has been critical in intensive care for 5 days now but today he was taken off the ventilator. He is currently on on c-pap doing approx 60% breathing on his own. Its small steps but steps in the right direction none the less. He is pulling through little by little! The advice for us this week is "rush slowly"!!

One day when he is back to himself, I cannot wait to tell him all about this site so he can join in and help you and be helped by you. As we all know from the myeloma experience scenario is case specific. However, you cannot beat real life experiences for hope and encouragement along the way.

Today the aim is remission, tomorrow the goal is cure.

Much love from Ireland,
Lee

[Ron Harvot]

Re: Dad has myeloma, is critical with an infection - advice?

by Ron Harvot on Fri Feb 28, 2014 2:41 pm

In 2012 I developed C-Diff and Meningitus simultaneously. It was so bad that I lost my ability to speak, all that came out of my mouth was giberish (expresive aphasia). The reason was that my Immunogobulins were exteremly low so my immune system was seriously compromised.

Since then I was taken off of Revlimid and was given monthly infusions of IVIG to build back my immune system. That worked for me and I have avoided serious illness since.

Ron

[darnold]

Re: Dad has myeloma, is critical with an infection - advice?

by darnold on Fri Feb 28, 2014 6:55 pm

Hi Lee. Just want to wish your dad well. It sounds like he has a good attitude, which is sooo important for dealing with whatever myeloma throws our way.

As the other posters noted, we all face issues with our immune system, and our blood counts can fluctuate. We do tend to be more susceptible to infections and have to be careful. For example, I avoid taking the subway to work because I don't want to be in close, warm quarters with people carrying germs. I'm not germophobic, just careful.

Sending positive thoughts his way!

Dana