Patient Stories: Relapse
“Can you describe your experience with relapse?”
“I’ve relapsed 4 times over the past 28 years.
2002: Treated with Cladribine again and had a good response.
2008: Treated with Rituxan IV. This was not as easy. I believe they gave me IV Benadryl to go along with the IV Rituxan. I was in a bed for this, I would sleep, then be very groggy. My wife would accompany me and had to drive me home.
2014: counts dropped. I was recruited to enter a study testing Ibrutinib for about 4 months. Counts dropped again during the trial. The Ibrutinib was discontinued, and my counts came up to acceptable numbers.
2018: Counts dropped again. Treated with Pentostatin and Rituxan IV. I was anemic when I started the treatment. My Hb went down to 6.2 during the course of treatment. The low Hb led to a transfusion. I had “Rituxan maintenance” into the spring of 2019.
I’m seeing my Hematologist every 4 months at this point.”
“2023 relapse 3 years since treatment. Low blood count for white cells & neutrophils. Platelets have been low the entire time since treatment as well. Looking at a new drug because I didn’t get the durability from cladribine. 2 x 28-day course of ver & mixed in fortnightly rutaxamub waiting on approval for this to go ahead as the drug isn’t approved for HCL in Australia”
“Six years ago, I had the 24/7 cladribine treatment with no side effects whatsoever. I was fine until my platelets started dropping. I had cladribine once again, this time for 2 hours each day for 5 days. On the sixth day, I had a fever of 103.7 and ended in the hospital for six days. I am fine now, however this last treatment left 10% hairy cells. So I had 8 weeks of Rituximab.”
“After about another 5 years I relapsed they tried Cladribine again, this time remission only lasted 18 mths.......so they tried CHOP apparently there was some success in the US all CHOP did was make me violently ill....so they tried another new treatment Mabthera now known as Rituxiban did It make a difference doctors and i not sure....during this time I had multiple BMB,s and scans.....bringing me up to the 2000,s in 2003 I became violently ill whilst on a overseas assignment in China/India couldn’t eat...back home and diagnosed with a lymphoma type tumour blocking my duodenum so a stomach by pass performed I almost died....another tumour developed about 9 months later and I had Radiation 20 sessions..shortly after I had to give up work...couldnt travel anymore. since 2004 I have had multip[le treatment and heart issues caused by chemo....bendamustine rituxiban back in hospital we had moved to Queensland and severe sepsis nearly died again...then tried the lifesaver on trial and compassionate supply Ibrutinib...success remission for 5 years then started to get toxic so suspended Ibrutinib......now watch and wait with HCL showing signs of returning Fatigue bone pain night sweats etc now under diagnosis again and meeting with Haem team to determine next steps....”
“I did relapse. My blood was monitored every 2 months. After 7 years in complete remission, there were detectable HCL cells in the blood. As their counts climbed, the normal blood count went lower. In 2017, I had some infections and I was treated with 4 times Rituximab only, since they were afraid to put me on 2-CDA. At that point my bone marrow was 20% HCL. I responded and all blood counts went to normal, but there were still HCL found in the blood. Last summer I needed treatment again. This time they treated me with a 5-day subcutaneous course with 2-CDA, followed by 8 weekly doses of Rituximab. They put me on Valtrex and Pentamidine inhalation after the 2-CDA. I need to take the Valtrex for a period of 6 months and the inhalation of Pentamidine every month for a period of 12 months. Blood testing after 3 months resulted in CR and no sign of any HCL in the blood.”
“I have relapsed 3 times now. I was treated the second and third times with cladribine. Most recently, I was treated with moxetumomab pasudotox and am currently in remission. The end of my remissions was determined from quarterly blood tests. When my neutrophils dropped below 1.0 and platelets dropped below 100K, treatment was planned. I have never felt ill from the hairy cell leukemia. No one really knows if my DVT was a result of having HCL for sure, but the doctors are suspicious that they are related. I have not had additional DVT issues since the first time. I used to take Warfarin regularly to prevent future DVTs, but have switched to Xarelto now. I generally do not get a lot of colds, have never had pneumonia, and can’t remember the last time I had the flu. Although my neutrophils are always on the low side, even when I’m in remission, it doesn’t seem to cause me a lot of trouble with my general health.
I did have a bad experience on my last treatment with moxetumomab pasudotox. I came down with capillary leak syndrome after just 2 infusions and had to stop treatment. Despite some side effects, the moxe did fix my blood counts very nicely and I’m in remission again with the highest counts I’ve had in several years. Not bad for getting just 2 of a scheduled 18 infusions!”
“I was hopeful the Cladribine would work well and my remission would be long. However, that was not the case. My remission lasted only 24 months. I was very disappointed after being told of the slow growth HCL has. Apparently not so for me.
For my second treatment, my oncologist decided to use Pentastatin instead of Cladribine. I was on Pentastatin IV for about 3 months. My condition worsened. Pentatstatin had NO positive effect on me. My blood counts dropped seriously low; ANC in the .3 and then .2 range. There was fear to return to Cladribine using the normal dose treatment. My oncologist consulted with peers and determine to use a weekly low IV Cladribine dose over an extended period and supplement this with Rituxin. The result of very positive. This time remission was only declared after a bone marrow biopsy showed no residual HCL in my marrow. My remission lasted 5 years this time.
Two months into remission I developed Sweets Syndrome (or so the condition was labeled). I was on Prednisone for 8 months to clear the initial condition and keep it away. Sadly, my HCL returned and we followed the same protocol (weekly low IV dose of Cladribine and Rituxin over 6 weeks). While our hope was same result as before, the reality was only a 12 month remission. Very disappointing and unnerving. Didn’t have any answers or thoughts as to why my results varied so much.
Today I’m in the midst of my fourth treatment. Treatment has changed. Now the oncologist is attacking the BRAF positive marker. I am taking Vemurafenib tablets with Rituxin IV. I’m hopeful this protocol will achieve positive and long lasting results.”