Hairy Cell Leukemia

I was diagnosed with HCL last November and started treatment with cladribine shortly thereafter. I had a break for 6 weeks due to a significant rash. Tomorrow I’ll have my 7th of 8 weekly rituximab infusions. My blood counts are approaching normal levels now and the side effects bearable. I’m in Nashville TN and have virtually met and received support from others with HCL on this support group https://m.facebook.com/groups/hairycellleukemiasupport/?ref=share&mibextid=l066kq. Also you’ll find great educational information on hairycellleukemia.org.

What can i expect? My husbands bone marrow biopsy just came back positive with Hairy Cell Leukemia. We meet with the Hematologist/Oncologist tomorrow to go over results. I am a nurse of 15 years but never worked with oncology. I want to know how to support him in this journey and what to expect. Thank you!

@c1608 I am so sorry to hear of your husband’s diagnosis. Cancer is a very difficult time for everyone. But you can do it, and with your help, so can your husband. Right now, you can sit together and talk about how this ( going through treatment , etc) will change things. Your husband may want you to handle some things that he used to do. But, he may want to continue doing as much as he can. He needs to maintain some control.
You can also get a small 3-ring binder and start a journal where you’ll write down everything that’s said and your husband’s daily health.
As one nurse to another, i would recommend that you wear your ‘nurse hat’ when at doctor visits, when sitting in chemo room, etc. You’ll want to keep your eyes wide open, making sure everything goes smoothly. Once you get home, leave your nurse self in the car and become a wife again. Take it 1 day at a time! I was an oncology nurse, so you can ask me any questions.!
There is a Blood Cancers support group and you can probably find answers there.
https://connect.mayoclinic.org/group/blood-cancers-disorders/
Just click on the link and it will take you there.
Do you have any ideas of how you want to support him?

@c1608, I like how @becsbuddy - from one nurse to another - reminded you how you might tap into your nursing persona, even as your role is different as a caregiver for your husband.

You'll notice that I moved your message to this existing discussion:
- Hairy Cell Leukemia https://connect.mayoclinic.org/discussion/hairy-cell-leukemia/

I did this so you can read previous posts (old and new) and connect easily with members like @ptannie who has also recently been diagnosed, @tallyteresa who’s husband has had HCL for 14 years and @phyreguy79 who’s had HCL for 10 years. They will journey along with you.

As you try to get some sleep tonight keep a pen and paper beside your bed. If you mind starts racing, write your questions and worries down. Don't let them whirl around. At the bottom of this article from Mayo Clinic, they provide questions you may wish to ask your hematologist-oncologist
Hairy Cell Leukemia: Questions to Ask https://www.mayoclinic.org/diseases-conditions/hairy-cell-leukemia/diagnosis-treatment/drc-20372962

Thank you so much for responding. To answer your question, I just want to be his rock and his advocate. We have 4 boys ages 13-23 and we have not told them yet. We have his first appointment tomorrow to discuss his results of his bone marrow biopsy (we received the results online first and haven't spoken to the MD yet). I would like him to do any treatment through OHSU since that was where he was diagnosed with MS. I don't know what to expect and we are both scared right now. I just want him to have the best life he can.

@c1608 This site has great educational material, listing of centers of excellence for treatment, online support groups and live webinars. https://www.hairycellleukemia.org/about-us
I’ve gotten wonderful small group and individual support from member of this support group: https://m.facebook.com/groups/hairycellleukemiasupport/
The third resource that I would encourage you to explore is NIH. The lead investigator is Dr Kreiman. He is very responsive to inquiries. I send my blood there currently for a study on Covid-19 and HCL. kreitmar@mail.nih.gov
I had a scary couple of months but on the other side of all that and happy to help you if I can.

Hello and sorry to hear about your husband's diagnosis. I'm now in my 2nd remission and if all goes well in mid May, I won't need to see my oncologist for a few years until it rears it's ugly head again.
I just turned 68 last month and I hope to get close to 80 before I really need to worry. There are great stories of life with HCL. Please think posistive and wish your husband well.

Steve

@c1608 Just thinking about you on this gorgeous spring day! You said that you were going to have a doctor appointment. How did the meeting go?
Do you and your husband feel comfortable with the plan of care?

We are still waiting for OHSU to contact us for his first appointment. He's very anxious about how chemo is going to affect him. I'm just trying to listen right now and be a shoulder. Thank you for reaching out and asking! Happy Spring!