My husband came home from the Hospital last night.
He had two treatments of Gayzena (sp)
Now he is has another due on Friday. They are ant him to come in today and he Nulasta .
I’m worried about the whole thing he is exhausted, large spleen, low blood pressure and low Neuriphills.
I read that a side effect of Nulasta is ruptured spleen.
Anyone have experience with this.
I did leave a message for his team at Mayo.
Thank you
The Mayo has a good reputation; it would seem likely they know what they are doing.
So, treatment has started - the excess lymphocytes causing his swollen spleen will be dying in large numbers.. He needs to drink a healthy amount of fluids.
..the extent of swelling of his spleen is going to rapidly benefit.
Treatment with nullasta to stimulate neutrophil production is likely their wise treatment approach; mitigating infection risk is most important.
No doubt Mayo will answer your doubts with reassuring words along these lines.
-- My BR treatment saw me, unexpectedly, neutropenic before cycle3. Result? Treatment delay; 3 nights in hospital; neulasta / pegfilgrastim injections; and very serious risk of sepsis.
The fastest things to change for me were my lymphocyte count and my neutrophil count.. I'd suggest it sounds like Mayo are doing things correctly.
Good luck. Querying Mayo is definitely the right thing to do.
I've been on several G-CSF injections weekly for over a year and I have an enlarged spleen. Looking at the clinical reports, I couldn't find a case with a CLL patient. The reports note that such incidents are extremely rare and tend to happen in healthy people. That's because the spleen stores neutrophils and a healthy person is more likely to over produce neutrophils, causing the spleen to swell and rupture. I very much doubt your husband's bone marrow would be capable of over producing neutrophils enough to endanger his spleen while under treatment, particularly while under the care of Mayo Clinic.
Neil
Neil, Thank you for the information. Cll seems so complicated and overwhelming. It went from no treatment feeling ok to treatment and so many numbers thrown our way to feeling weak and exhausted. So grateful to have found this group and all the wonderful people in it.
Hi Aunt Helen (I did have an Aunt Helen by the way!)
Did your husband have an enlarged spleen prior to treatment or did it developed after the was injected with the Neulasta?
D.
He had a enlarged spleen when he got diagnosed a year ago. The Neulasta is new as of today.
I just read AussieNeil's post to you and he provided some very good info.
My husband had a very large spleen and once he was on treatment for a couple of months, had to have Neulasta shots. He has completed treatment but his spleen never reduced back to normal size - it is still 17cm and he didn't have any issue with the shots.
All the best to you and your husband for a successful treatment!
D.
My husband has CLL and just started Gazyva too.
Your husbands spleen is going to start to shrink soon. What is he getting besides Gazyva ? Venetoclax?
By my husband’s forth treatment of Gazyva Monday ....he said today he is feeling 80% better.
This is a long distance marathon, Aunt Helen. I hope I can call you that as I had an Aunt Helen.
You have to take a deep breath and say I have done everything I possibly can do today as his wife. Just try to take things day by day and do not anticipate the worst. Your husband is not going to die from a ruptured spleen. Even if it did rupture (unlikely) they can remove it immediately and save him .
He is going to live and you have many years ahead of you
See article I just posted on IB plus R.
Neulasta is to help neutrophils go up which is a good thing to do if his neutrophils are low.
Hang in there .....this will get better. It is going to take time so take it easy.
-❤️Steffie@LoveCuresCLL
Love cures, Mayo is only giving him the Gazyva. I’m happy that your husband is feeling much better.
I’m trying to take it one day at a time, hour at a time, advice I have been giving my family for years, so now I DO need to follow my own advice.
Lot of Aunt Helens out there! I got the name because I kept mangling my niece’s boyfriends name, so he started calling me Aunt Helen, sort of just stuck.
Good luck with the treatments, 80% better sounds like a great start!
Do you know why your husband is getting Gazyva alone?
- Bobby
Bobby, Thank you, we need all the luck we can get. He seems weak to me today and I worry about the infusion tomorrow. When he collapsed on Saturday, I had a real hard time contacting 911, I dialed it three times. We have bad service where we live. Thank goodness the Sheriff’s office called me back to ask if everything was ok. I can’t have that happen again.
I do not know why he is only on the Gazyva. He had a bone marrow and labs and that is what his specialist recommended.
Wishing you well.
You and your husband have the right to ask why this treatment was chosen. I don't know which Mayo you are seen at, but all of them have CLL specialists in their hematology departments. I received Gazyva alone and it has kept me in remission for three years so far with no hint of my CLL returning. Two friends started it just before I did, in their cases primarily to deal with their nodes, with a follow up treatment down the road. It could be that your husband's doctors want to see his spleen reduced in size before anything else is considered, if he needs more treatment.
You are right about CLL being complicated and confusing. Keep asking questions, both of his doctors and here. The basics will become clearer. The rest is confusing to all of us, because every patient is different. Stick to reliable resources like cllsociety.org There is an incredible amount of incorrect and dated information that comes up on google searches.
I hope that tomorrow is uneventful. Let us know how it goes.
MsLockYourPost,
Thank you, we are here now at the Mayo in Jacksonville. We did the watch and wait at Stanford. We are fortunate to also live in Florida , so we switched to Mayo for treatment.
Very happy to know you are in remission. And wishing for you many more.
Dr. Asher Kahn? I have friends who absolutely love him. I heard him speak at a conference and was very impressed.
I looked him up, great Doctor.
My husband has Dr.Sikander Ailawadhi. We like him a lot, he explains everything to us, but as soon as we leave, we forget e etching he says. We are still hanging out at Mayo, they have the coffee going and snacks. Hope you are having a good day.
Take a recording device (phone app) to appointments. When I was new being able to go home and listen to everything again, sometimes multiple times, outside of a stressful office situation, was very helpful.
The advantage of a cancer center like the Mayo, is that you get the benefit of multiple doctors brainstorming about your case, especially if there is any question about the best way to proceed.
Love that my infusion center has the coffee waiting . Getting out of the house and on the road early enough to deal with LA traffic is a challenge. I don't get my morning coffee fix until I get to the infusion center. The plus to that is that if there are any add ons to my labs that require fasting, I'm good to go.
The recording device is a great idea, I will definitely take one next time.
Some great Doctors in LA too. My niece lives in Encino, I was there in June, loved the diversity in the LA area. So many kinds of food to try.🌼
I’m north of LA, but it is worth the time on the road to have doctors I trust. If you come back this way let me know. Always fun to connect with people in person.
Hello
After 2 cycles of BR I had serious side effects as my Leucocytes and Neutrophils went down. After a shot of Neupogen my Neutrophils and Leucocytes were raised to normal ramges. I believe Neupogen is a life saving drug. Please go head with the Inj Nulesta.
All the best
We went ahead with the shot of Nulasta and the Gazyva infusion.. He is tired today but more like himself. He didn’t get the dizziness after this third infusion. So I’m hopeful things are getting better.
Thank you to all that reply to me. I felt so much support. 🌼
Is he on any blood pressure meds ? Maybe you need to consult with the doctor who prescribed the pressure meds, if he is on any. I know my pressure meds need adjusting sometimes cause my pressure goes too low . It is good you contacted Mayo, but you still need a regular internist to manage his pressure and regular things that happen as we go on through life. I have a derm , family medicine , cardiologist and my CLL specialist , I notice the CLL doctor doesn’t help with my pressure and so on and so on. So I go to my cardiologist for my pressure..
As far as the spleen rupturing ....he would know if that happened for sure. He would have abdominal pain.
It would have to be a huge spleen to do that ....he would feel it on your left side.
It would be good to ask how big it is currently when you go to Mayo. They will examine him by pressing there on that left side, It sounds like a rare complication . I am on Gazyva too.
Good luck I wish ....I could help more.
LiveCuresCLL,
He was on a very low dose of blood pressure meds, but not for blood pressure. It was for protecting the kidneys because he also has Diabetes. He also just saw a new primary Doctor who will monitor all his other ailments. My Husband could not get a primary care at Mayo Clinic because he was already on Medicare when he came to Mayo.
Mayo does have this program ( survivorship), that hooks you up with all the other specialist that you might need.
As far as the Spleen my husband can feel it when he sits at certain angles, not sure the size, but will see if we can get a measurement.
How do you feel on Gazyva, what are your side effects. How far are you into your treatment?
My husband has been in bed most of the time. His appetite is back, but I think it is due to the steroids.
Be well🌼
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