Well my husband started Imbruvica on Oct 5 with wbc at 300,00. The week of Dec 20 his hands, fingers, and wrist broke out with an inflamed almost like a blood blister rash. Doctor took him off Imbruvica and started him on prednisone on Jan 6. His wbc was down to 11,600. Great! This past week he had felt fullness and didn’t want to eat much because of that. But the blood count was good so couldn’t be be the spleen right? He thought he needed probiotics. It was 5 more days until he was going to try the Imbruvica again. Thursday night at nine pm he had sudden extreme left shoulder, neck and abdomen pain. We went to the ER. His wbc was at 30,000 and his spleen was bleeding. Transferred to a large Iowa hospital. Radiology went thru groin to see if they could plug the hole if they could find it. I was told they plugged the splenic artery because the spleen had a 2.5 in laceration and 3 smaller ones. They are talking of removing his spleen on Tuesday. Don’t really know why this happened he hadn’t injured his self. He is positive for deletion TP53 on 17p13.1 , gain of ATM, deletion DLEU on 13q14.3, CD 45, CD19, CD 20, CD5 and FMC7. I understand some of them but not all. I wish there was list of good and bad prognostic markers..google isn’t quite doing it for me.
CLL the unexpected. : Well my husband started... - CLL Support
CLL the unexpected.
Here is one list of prognostic markers. Your husband’s 13q deletion status is listed in this list as a good prognostic marker, but to my understanding the presence of 13q is favorable only when it’s the only genetic anomaly. The 17p deletion would trump the 13 q, so to speak, as I understand it.
cllsociety.org/2017/09/prog...
I am not sure what might have caused his spleen to rupture, absent some sort of trauma. If our spleens enlarge due to our Cll, they are more at risk to rupture, but rarely does a spleen rupture without trauma, so far as I know. Absent any other explanation for his apparent spontaneous spleen rupture, it strangely enough could be caused by pausing ibrutinib. Here is a case study where that is discussed:
We postulate that temporary cessation of the drug reversed chemokine inhibition, allowing a sudden influx of malignant cells into the spleen.
onlinelibrary.wiley.com/doi...
Hey thanks for the info. Hadn’t even heard/thought about that possibility. We’ll have to ask the oncologist about it.
Great post. I learned something new. May your husband get well soon, fingers crossed.
Hi GrannyMyers,
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cajunjeff has provided an excellent answer for the most serious parts of your question.
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An easier part of your question is the list of CD45, CD19, CD20, CD5 and FMC7. These are surface markers on white blood cells and are identified by Flow Cytometry to narrow the diagnosis to CLL and exclude other similar NHLs (Non Hodgkin Lymphomas) like Follicular, Mantle Cell, MZL etc.
verywellhealth.com/flow-cyt...
lls.org/treatment/lab-and-i...
Flow Cytometry
Flow cytometry can identify the type of cells in a blood or bone marrow sample, including the types of cancer cells. It detects types of cancer cells based on either the presence or the absence of certain protein markers (antigens) on a cell’s surface. The most common use of flow cytometry is in the identification of markers on cells, particularly in the immune system (called immunophenotyping).
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However these tests are not absolute as variations can occur from patient to patient, as mentioned in this slide presentation.
ericll.org/wp-content/uploa...
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Len (Corrected thanks to suggestion by SeymourB )
Thanks. I know the husband doesn’t have a couple of CLL markers and does have a couple of mantle cell markers but the final diagnosis was definitely CLL. As you say there are no absolutes I guess.
Hi GrannyMyers,
I’m sorry to hear about your husband’s rash and broken spleen. I’m not entirely surprised though – here is my spleen story.
In August 2015, I started on Idelalisib for my CLL, as my spleen was very enlarged and stopping me eating properly. Other reasons for starting treatment were weight loss, very high WBC, and haemoglobin dropping rapidly.
Idelalisib worked very well. Spleen started to shrink immediately, and I could eat again. I felt much better. But in October, just 2 months after starting the drug, I got a nasty rash. The doctor told me to stop the Idelalisib for a while, as it could cause rashes.
A few days after stopping, I started getting stomach pains after meals, that I assumed was a nasty sort of indigestion.
To cut a long story short, it eventually turned out that I had a torn spleen, and was bleeding internally. They reckoned that the Idelalisib had drawn LOTS of lymphocytes out of my spleen, but those lymphocytes were still in my blood. When the Idelalisib was stopped, those lymphocytes flooded back into the spleen again, and the sudden expansion caused it to rupture.
The spleen had already been stretched by getting over-full of lymphocytes earlier, and this had weakened its walls. It may also have been bruised by my knocking my abdomen as I went through a narrow doorway carrying a large photo album, and the corner of the album hit my abdomen quite hard. It was painful at the time, but the pain wore off.
Later when asked if I’d had any trauma to my abdomen, at first I said I hadn’t, as I’d forgotten about the photo album incident.
Anyway, by the time they had diagnosed the broken spleen, I’d lost a lot of blood and was extremely weak. I couldn’t walk – could hardly sit up. I had to have emergency surgery to remove the spleen. At first they thought they might be able to repair the lacerations in it, then decided that wouldn’t work.
So, that is my spleen story.
Interesting that cajunjeff has given a link to a similar story but with Ibrutinib. onlinelibrary.wiley.com/doi...
While I was in hospital recovering from the surgery, a medical student asked me if he could write up my story. I agreed, but never heard any more. Not sure if he ever did it.
I wrote about my experiences with Idelalisib (and stopping it) at the time.
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
I hope that the danger of ruptured spleens when suddenly stopping treatments like Ibrutinib and Idelalisib, becomes more well known.
Paula
I remember your traumatic spleen rupture at the time Paula and we were all frantically worried about you! It certainly made me guard my own very swollen spleen after your experience 😳
Newdawn
Wow that does sound very similar to our story. Thank you.
At diagnosis in September the husband’s spleen was at 23 cm and the end of November was down to 16cm but in the ER it was back up to 21cm. This morning his wbc was at 51,000 while January 4 it was just under 12,000. We are just very new to this. I appreciate everyone’s story and all I can learn from the members. Thanks to all that share.
Wow, Paula - those posts were before my time on the forum and I had no idea you had gone through that. I am so grateful you pulled through that experience and thank you for sharing your story. My husband's spleen enlarged to 23cm and I was pretty nervous about it being that size.
Hi Paula
It sounds like the risk is heightened when a treatment is stopped abruptly shortly after starting. If you had continued on with treatment for say 6-9 months and then stopped do you think things might have been better since most of the CLL cells would have been dead? Obviously, the trauma you experienced played into this is well. There seem to be parallels to Venetoclax when it kills off CLL cells quickly shortly after starting which can overwhelm the kidneys. I’m glad you came through the experience well and are here to help others.
Best,
Well
Thanks, HopeME . You’re right that the risk of spleen rupture increases when someone suddenly stops treatment soon after starting it. The risk increases if the person had a very enlarged spleen that reduced in size during early treatment. Risk increases even more if there’s been some previous bruising or slight damage to the enlarged spleen.
If I’d started treatment earlier, the spleen wouldn’t have got so massive, but I was waiting for a trial that kept being delayed.
If I’d been on Idelalisib for longer, the lymphocytes that had come out of the spleen would’ve had time to clear out of the bloodstream, and wouldn’t have been around to flood back into the spleen again when the drug was stopped.
If I hadn’t knocked my abdomen on the photo album as I went through that doorway, the spleen might have coped better.
All those things played against me...
At the time all this happened, my consultant was abroad at a CLL conference. The leukaemia ward was full so I was admitted to a breast surgery ward on the other side of the hospital (a good 10 minutes walk from the leukaemia ward). Some doctors didn’t know where I was – I wasn’t included in the standard ward rounds and I don’t think the nurses knew much about CLL.
I’d been admitted for high fevers and abdominal pain that was worse after meals, so it was thought to be some gastric problem. It wasn’t till several days later that a scan showed abdominal bleeding due to ruptured spleen. During that time, I was quietly bleeding internally and getting weaker and weaker. Just as well it wasn’t a more drastic rupture…
Action was taken quickly once the diagnosis was made, and I had emergency surgery on a Friday afternoon. My husband was told I might not survive, but I didn’t know that at the time. He called our two sons and they both came from other cities to see me, just before my surgery.
I remember being on the trolley on my way to theatre, when my second son arrived. I was very surprised to see him – wondered why he was there.
I also remember seeing the CLL registrar who diagnosed the ruptured spleen, as I was about to go to theatre. I smiled at him and was surprised he didn’t smile back. He looked at me in a very worried way – not like him.
Anyway, recovery had a few complications but I came through it and was fit enough to go to our elder son’s wedding in Scotland a few months later.
Memories…
I am very thankful to that registrar who diagnosed my spleen rupture. After the surgery, he took time to explain about stresses on the spleen and the lymphocytes having gone back into it when Idelalisib was stopped. I’m very glad he did that. It helped me understand what had happened and shows that he’ll be more aware of that problem in future.
GrannyMyers , it’s interesting that with your husband, they were able to use radiology to plug the splenic artery, so his spleen removal wasn’t so urgent. I wish him all the best as he has his surgery tomorrow. Let us know how he gets on.
Paula
Hi Paula:
Thanks for the further detail. Yours is an interesting example of how waiting a little too long to start treatment for a perfectly good reason (trying to access a trial), coupled with unanticipated variables (a vacation and a busy hospital) can have dangerous consequences. I also started my frontline treatment too late due to an inexperienced doctor and his vacation schedule which resulted in a tough go of it for me. I obviously made it through but it was touch and go for a bit.
I recall when things weren’t going well after the first or second round of chemo my wife came along to an appointment and asked the doctor “is this normal” (she was questioning low hemoglobin and the need for blood transfusions) and the doctor got uncomfortable and defensive. I knew right then I was in trouble. Luckily I was young and strong enough to pull through.
The only other time she came to one of my appointments was when I was getting a second opinion at Dana Farber after the conclusion of my six rounds of chemo. The doctor had to step out of the appointment about half way through to attend to another patient and she looked at me and said you need to transfer your care today which I did at the end of the appointment. It’s amazing the detail we recall.
The bottom line is CLL is a complex disease and I know now the need for experts is paramount as “smart patients get smart care”. And even when this happens unexpected occupancies can arise as they did in your case to make things challenging.
Thanks again,
Mark
Hi Mark,
Thanks for sharing your story, though I was sorry to hear about what you went through during your first treatment.
So glad you got a second opinion and decided to transfer your care to another doctor. Not an easy thing to do – good that your wife was with you that day to support you.
As you say, it’s amazing the details we remember, especially about certain key moments things in our lives.
GrannyMyers , do let us know how your husband’s surgery went yesterday, when you have time.
Best wishes to all,
Paula
Thank you.. your story is very enlightening.
Following your story and just praying for healing and a source of excellent treatment for us all
Thanks. He is scheduled for surgery tomorrow.
I hope all goes well.
Thanks. I’m getting anxious.
I hope things have gone well. What a worry.
Operation went as expected. Recovery is definitely no fun and has its ups and downs. Thanks
Hi Granny:
I wish you and your husband well tomorrow. Knowing what the medical issue is and being treated at a large hospital is the most difficult part of the problem. By this time tomorrow night your husband will be recuperating and you will feel much better. Your husband is going to be fine. Get some rest and try not to worry.
Best,
Mark
🙂thank you.
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