Good day to everyone. I observed for a couple of weeks and felt the love. So I decided to post and share my story.
Husband was Diagnosed with CLL with MDS in 2008. ( he’s now 50 )
WW until August 2011
FCR August 2011 -January 2012 - reached good #’s and he felt great until March 2015 when CLL came back very aggressive. He then only received 3 cycles of Bendamustine and Rutuxon stopped due to platelets hovering around 10k. Platelet transfusion didn’t help. Then he started Ibrutinib for 3 months no response. Then on Idelasilib for little over a year then it felt like over night he got sicker and his numbers got worse....So he’s now on Venetoclax he starts his 200mg dose this week. He’s had 2 platelet and 2 blood transfusions since starting the first 20mg. He tires really fast and no nausea until this week. ( not looking forward to the next ramp up)His platelets are holding at 16k. I see another transfusion in the near future. If venetoclax fails then a 350 mile drive for clinical trials.
Oh my~sorry for being so winded. I’m trying to take care of my self and thought hearing others would bring me peace and hope.
Thank you in advance for your kindness.
Written by
Midgey_
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Hello Midgey, so glad you decided to tell your story. What an ordeal you are going through!! I am so hoping the Venetoclax works. Hubby is still in W and W but one day That or another will be the drug of choice. He is mutated so chemo will not work for him. Glad to know it before he had it.
This is the start of Thanksgiving week in the US so others may be late saying Hello. But everyone does care about each other. Again, really hoping the Venetoclax works. It seems to be a good drug.
Just clarifying for Midgey that your husband has 17p del 'mutation', which is why chemo won't work well for him. Confusingly, when we mention mutated or unmutated in respect to CLL, we are specifically discussing whether the IGHV gene in our CLL cells has gone through the somatic hypermutation stage. 'Mutated' means further along in the B-Lymphocyte lifecycle, which correlates with a longer time to treatment and the possibility of remissions of over 10 years on FCR.
Hi Midgey,
Your husband sure has been through a great deal. Venetoclax has a good reputation for being effective on patients 'beaten up' by previous treatments. Wishing him good results.
Hi Neil, thank for the clarification. Since Venetoclax is approved for 17p and he doesn’t have that nothing has helped his declining health we are hopeful. So specialist is trying this. It took 3 appeals to get ins co on board. One day at a time
It sure is hard being the support person I’m sure. I’m glad you’ve joined us so we can give you some support. Don’t be afraid to ask any questions. There is always someone who has been through it or researched it and they are willing to guide us. Living in Washington state I’m sure you have access to a CLL specialist and/or a cancer center. That will sure help with your husband receiving the best of care. I will keep you and your husband in my prayers that the Venetoclax will be his miracle drug. Please keep us updated on his progress. Stay strong. Sally
Thank you Sally for the kind words. It is tough and I’m trying to stay strong. I tend to keep things to myself so I’m hoping this group will help me open up.
Is that a picture of your dog? Sweet face. When I can’t talk or vent to anyone, I have two yellow labs that listen patiently and they don’t repeat one word.☺️ We’re always here for you and we know the roller coaster ride that you are on. Kindness always, Sally
That’s my Bridget. She was a rescue but I think she really rescued us. You are right they listen and love with no judgement and always a wagging tail. Godsends for sure.
Will keep you in my prayers. Do hope venetoclax works. You guys have been thru the wringer. I have Cll now but I was the support person for years when my husband suffered with Chronic Fatigue Syndrome. Being the support person is tough.
My husband was diagnosed with Colon Cancer at the age of 47. I felt as if a guillotine hung over his head from that moment. We too went to quite a few places along the journey. We also came to love and know and appreciate each other so much more. I am so glad you found your way here! Many of the club no one wants to belong to on this site are so kind, knowledgeable and helpful. I am here for my own diagnosis of Cll now. Take good care please and know you are not alone -S
Thank you so much. Such kind and true words. It has been a long journey. I’m trying to take care on do more things with family and friends but the guilt is there so I don’t. Best to you along your journey
Good that you felt you could share Midgey. As a patient I value my careers sooo much, they need the forum friendship and support as much as us patients, maybe more. Keep us posted and keep strong.
Hi Midgy. I’m male 49. Diagnosed 2007. Fcr 11 times bend 3 times. Ibrutinib nine months. After ibrutinib still 40 percent cll in bone marrow. Up to 75 before venetoclax and now 0.00 !!!!!!! My money is on a good outcome for your husband on this stuff. Hang on.
That is fantastic. So happy on your outcome. We are so hopeful. Were you 17p? He’s 11q with trisomy 12 and Myelodysplastic syndrome. Our specialist ran clinical trial with venetoclax so he’s hopeful.
Hi Midgey, you can get more helpful information here. Lots of examples to show that the Venetoclax can works well, so do not give up. My hubby is also 11q del and this type of CLL develop fast. When he was in the Venetoclax journey, he still experience lots of risks, stop 20mg on day 3, then continue to 100mg stop because high Lactic Acid that is very dangers, and life- threatening. After the value reduced then continue. The doctor asked him to give up, but he insisted to continue and keep very good communicate with Dr. Finally he took Venetoclax + dexamethadone for 3 days. It works and the larger lymph nodes reduced a lot. Others almost gone. The combination medicine is super. It is just for your reference. I hope you discuss with your Dr. To find the solution that more fit into your hubby situation.
Stay strong, hope your hubby can find his most suitable solutions.
You might want to PM andrewschorr here. He has both MDS and CLL and is being treated by Dr. Kipps at UCSD. He might have some helpful input or be able to have your specialist and Dr. Kipps connect to brainstorm the situation.
I am also the caregiver of hubby recently dx CLL still researching and putting together a team. But I have years experience caring for another family memeber. Please d not let the 'guilt" voice take over! You must take time for yourself and seek out your own support group from friends and family. It will help you be a better care giver to your husband! So, here is permission: make plans at least once a week with a friend, or do something special just for your self!
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Post on behalf of my mom : CLL Diagnosed 2021 , Mutated , Trisomy 12 - W&W for now
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