Plasma Cell Leukemia

VivianLee5689

I am trying to find out information on plasma cell leukemia. My husband has been battling Stage IV oropharyngeal cancer since July. We have had several setbacks and my 47 year old husband has gotten worse and worse. He has had to be in the hospital for hypercalcemia and acute kidney damage. We were called in last week and told David has a second cancer. They are doing tests for either Multiple Myeloma or Plasma Cell Leukemia. They said they have never seen this in a head and neck patient, but David's numbers are really not good. So I guess I am trying to find out information on this cancer. We have an appointment with the hematology oncologist on Monday and will find out for certain which of the two cancers he has. I have found a lot more information on Multiple Myeloma than on the Plasma Cell Leukemia and according to our chemo doctor that is what she was leaning toward. Of course we had more testing that they will have to make the final decision on Monday.

nempark

So sorry
I have never heard of plasma cell. My daughter (45) has ALL and as I write she seems to be losing her one year battle. It's now 28 days in hospital and her previous chemos failed. Now the Doc is doing a trial chemo and I really think that it would be a medical miracle due to her present condition. I pray to God that she survives and beats this monster. Sorry on this forum it is quite difficult to get answers. I was told to go to the lymphoma and Leukemia site and you would get more answers. I do hope you get the best treatment and I pray that you Pray to God for wisdom and courage to help you battle this journey with your very young husband. Please let us know how you are doing.

curtisc

I'm 42 years old and I was
I'm 42 years old and I was diagnosed with plasma cell leukemia in September 2011. I was told that the prognosis were low
with regular chemo and the only way for me to survive would be a bone marrow transplant. I had a transplant in February
2012. I have severe neuropathy now but, I'm alive. I am under doctors care, going to the hospital twice a month to be tested.
According to the doctors all my blood work looks good.

nempark

I lost her
She passed on peacefully.

VivianLee5689

nempark said:

I lost her
She passed on peacefully.

So sorry nempark
OMG this cancer really sucks. I am so sorry to hear about your loss. I am sitting here in the hospital beside davids bed while he is running 102.4 fever. He bled a lot today from a PICC they had to remove. We were told even if he gets out of the hospital he has to go to long term care because he needs 24 hour care. He is only 47. I don't understand why we lose our loved ones and during the holidays. I am so very sorry.

nempark

VivianLee5689 said:

So sorry nempark
OMG this cancer really sucks. I am so sorry to hear about your loss. I am sitting here in the hospital beside davids bed while he is running 102.4 fever. He bled a lot today from a PICC they had to remove. We were told even if he gets out of the hospital he has to go to long term care because he needs 24 hour care. He is only 47. I don't understand why we lose our loved ones and during the holidays. I am so very sorry.

Thank you
Just keep loving him and be with him as much as possible. Not to be insinsitive at this time, but I hope you have all your papers in order. 102 fever is very dangerous. OMG I had so much of that with my baby, I used to give her ice baths, then rush her to hospital. Now she is at rest and peace. Please keep in touch. I pray that you keep strong and healthy to care for your beloved.

curtisc

 
i was checking to see how

 

i was checking to see how your husband is doing and to see if he had PCL or not.

i

Mrs. Sarge

curtisc said:

 
i was checking to see how

 

i was checking to see how your husband is doing and to see if he had PCL or not.

i

Curtisc

You can check on her husband at Caringbridge.....davidgabbard

VivianLee5689

Mrs. Sarge said:

Curtisc

You can check on her husband at Caringbridge.....davidgabbard

Thanks for asking

David has been diagnosed with Primary Plasma Cell Leukemia.  They wanted to put him in a long term care facility because he needs 24 hour a day care.  I decided to quit my job as a school psychologist to be home with him.  We were told by the doctors that the chances of getting him in to remission were slim and 9 out of 10 who develop Primary Plasma Cell Leukemi do not live to get a bone marrow transplant and of those who do only 30% survive.  The doctor also told us if he is one of the lucky ones to go into remission it usually is not longer than a year.  It was very hard news to hear right before Christmas, but we are making the best of it.  We start chemo again on the 3rd of January.  He will have one day of chemo 3 weeks, rest a week and then start the cycle over.  This will be done for the remainder of his life.  Oh and thank you Mrs. Sarge for taking time to let people know where to find me.

kglassman

My wife of 62 years young was just diagnosed with primary PCL. Being staged now after Bone Marrow Biopsy, PET-CT scan, blood testing, looking at treatment options and considering all options, yes all options, in this most difficult diagnosis.

If anyone has any experience or comments on where, what and experiences good/bad, please write back.

KG

critter2

KG - my husband of 56 was just diagnosed with Ppcl in November. It has been difficult to find information as this form of myeloma is so rare. He is undergoing treatment for aggressive myeloma, no difference in treatment protocol. There are new treatment options for refractory and relapsed myeloma, bi-specifics and CAR-T, I do not know about Ppcl eligibility. You can also call the National Cancer Institute information service which can connect you with potential trial options around the US as well as other information. I understand the line is staffed by former oncology nurses. 1-800-422-6237. Cancer is always a difficult journey - sending you both luck and peace on this very challenging one.

kglassman

Thank you for reaching out. I left you a private message in response.