CLL person - 1st post

[chihuahua36]

I am a 72 year-old lady first diagnosed at 60 years old in 2004 with CLL and ITP. I was on watch and wait until 2009. I started on chemo and had only one treatment and two more half treatments but had to stop because the chemo was destroying my immune system. I had to be given blood over 80 times and also numerous platelet infusions, along with other meds. It took two years for my CBCs to read close to normal, but CLL was in remission and stayed so until 2016. My iron was extremely high because of the blood I had to have. It took two more years to get iron down. Thank goodness I had a wonderful doctor or I don't know if I would be writing this. I am now in a clinical trial getting infusions of ublatuximab every 28 days for six months along with ibrutinib. Minor difficulties that we learn to live with like: easy bruising, nausea, fatigue, leg cramps, changes in appetite, vision changes, extreme hair loss. The hair loss has been upsetting because it has been so drastic. I have lost about 2/3 of my hair and it is still falling out. Reading some of these other posts gives me hope that it will eventually stop. But if not, then if given a choice of hair loss or breathing, it seems such an easy decision.

[ap64]

Welcome. You have been thru a lot. Hope you enjoy the support you will receive from the group here if and when needed. I am w and wait so far so don't have a lot of info for you.

[Leshere]

Welcome chihuahua36 I am new too. What a history and yet you still write with consdiered courage: people like you give me a target to aim for. Gret news that you have a place on a trial even if you are getting side effects. Hair loss...well as you can see mine has just about gone anyway. As you point out a small proce to pay for life

Hope you stay around and join in

Les

[Peggy4]

Brave words. The last sentence sums it all up.

The physical symptoms are tough to cope with but the emotional strain of losing your hair must be hard to take I imagine and I think you are coping brilliantly.

Very best wishes

Peggy

[UK-Sparky]

Hi and welcome, we are a friendly lot. As with Les I too am follically challenged, glad you have a treatment to help and wish you the best

Marc

[serendipity1]

Welcome chihuahua36

You seem to be coping really well and it's totally understandable about the hair, but I agree with yourself, breathing seems such an easy decision.

I am unable to help as I am a carer for my partner. However, always here if you need a chat and you will find many helpful, supportive members on here, whom will be helpful and have answers

Take care

[Cllcanada Top Poster CURE Hero]

Don't worry hair grows back... I lost every hair on my body... overnight... when being treated for Richter's transformation...

I kinda liked the Kojak look... 😉

~chris

[Foggymind]

Welcome to our forum chihuahua36, sorry to hear you have had such a rough ride so far and I sincerely hope things improve for you soon. I am sure you will receive lots of support and comfort from the folk here. This forum has a wealth of information and a great deal of wisdom, some of which has been included in two documents created by members of this forum that I’m sure will prove useful to you. They contain lots of excellent advice about living and coping with CLL. These guides can be found by clicking on the links below.

Coping Strategies - Part 1

healthunlocked.com/cllsuppo...

Coping Strategies - Part 2

healthunlocked.com/cllsuppo...

Take care and best wishes

Kevin – Essex, UK

[sandybeaches]

Welcome to this site and hope you will let us know how you are doing. Sounds to me like you have been through the wringer washer but are holding up with the treatment you are on now.

I am wondering if your cancer centre has a wig department or someone in your community that they work with. The cancer centre where I live has a wig department where you can borrow one for a small fee. They also have very stylish hats and special scarves you could wear.

Best Regards,

Sandy Beaches

[virdieblue]

Hair loss is so devastating - it's such a sign of Illness. Sorry you have to go through it-

Virginia

[thompsonellen]

Wow, you must be a big fighter. I also had hair loss (I was shedding like crazy) but I had a lot to start with so I got lucky.

I take biotin and that seems to have stopped the hair loss and helped with brittle nails. I'm on ibrutinib and venetoclax and have completed 6 of 8 planned obinutuzumab treatments. Biotin was suggested by the OSU clinic as safe, but check with your doctor.

[DeletionLady]

It's been over a year since I posted! A few months after my initial CLL diagnosis in 2013, it was determined that I have a 17p deletion, making the CLL - as many here know - a more aggressive form of cancer. Prognosis: 3 years. My oncologist arranged for me to see the CLL Specialist on the team. We still did some short term watch and wait. My doctor fought to get me into a (Gilead Sciences) trial with Idelalisib and Rituximab in combination. After my first infusion - he spread them out over 3 days - I had tumor lysis and spent a night in the hospital getting things under control. My WBC count - in the high 300's - went higher initially, then within 6 months, came down into the normal range. I had no side effects while on the study, my lymph nodes shrank as did my spleen.

In March of 2016, the FDA -without prior warning to the oncology community - abruptly shut down the Idelalisib trial. In fact, I was traveling and my oncologist called me while I was in California. He had lobbied with the company to see if he could keep me on the treatment because of my good results - but to no avail. My counts began to rise almost immediately! Another trial was offered - the same one you're in chihuhuahua36! Ibrutinib in combination with Ublituximab infusions. This trial specifically targets patients with "previously treated 'high risk' CLL" - particularly those with a 17p or p53 gene mutation. According to the trial protocol I had to wait 3 months to start because I had been on Coumadin. I started in June 2016. I had some low grade diarrhea for about a little over a week, then some heart palpitations. But I've had a heart murmur since my 20's (I'll be 68 in a couple of weeks), and I've also had palpitations over time (too much caffeine intake; change in altitude). The murmur is due to a regurgitation of blood as the valve closes. I let my team know after about 2 weeks of palpitations and I was asked to come in for an EKG. My oncologist recommended that I see an oncology cardiologist who gave me a thorough exam, sent me home with a monitor and determined that my condition "was more a nuisance than a danger". He started me on Metropolol to slow my heart rate down.

That was August. Since then, I have had no other side effects. No shortness of breath, no fatigue, minimal bruising (I learned the hard way not to play the spoons on my thigh anymore!!!) My lymph nodes continue to shrink and my WBC count remains in the normal range. a couple of times, I was a tad anemic but that was easily remedied. I also take folic acid daily. I did monthly infusions until last month (October). Now I'll go at 3 month intervals. I take 3 Ibrutinib oral tabs daily.

My own hair started thinning about 8 years ago - before my diagnosis. Waaah! I have a great hair braider who is a miracle worker when it comes to creating pieces and styles that keep me looking fabulous!! She has helped many women who have alopecia or who are undergoing chemotherapy treatments. You'd have to get a magnifying glass in order to tell that what's on the top of my head is not growing out of my scalp! And yes, you may be able to get some great references from the Cancer Society in your area with regard to companies or shops that make and fit folks with wigs or pieces.

Chihuahua36 - TAKE HEART I just attend a Leukemia Lymphoma conference last Friday. The current treatment and trials and the new treatments in the pipeline for us are beyond promising. The prognosis for us defective gene folks was quite dismal a few years ago. Where 10 years ago the survival line on a graph was once a straight vertical line headed downwards for deletion patients, the results of current treatments and trials have caused that vertical line to flatten out and head towards longevity!! It all reminds me not to take my life for granted. I love and live each day that I'm still here! Hopefully, that will continue for many more years to come.All the best for good outcomes in your treatment!

[Justasheet1 in reply to DeletionLady]

DeletionLady,

You are awe inspiring. Have a wonderful Thanksgiving and great health. What great advice you gave

Jeff

[MsLockYourPosts Passed Volunteer]

Chihuahua - Take a good friend or family member wig shopping. Your cancer center may have a shop with cancer related products, like wigs. When I thought I might lose my hair a friend and I went to the Cancer "Boutique" and spent some time trying on wig options. It was good for a lot of giggles as we tried different styles and I left knowing that the Jennifer Aniston look is not right for me, and which wig I would get if I decided that I needed one.

TLC direct.org has a variety of wigs, hairpieces, and head coverings - worth checking out also. You can get a prescription for a free wig with many insurance companies, and some Cancer Centers also offer free wigs if you decide to go that route. I have to say that many women totally rock the "bald" look when they lose their hair. I don't know how much has to do with attitude and how much has to do with other things, but I've seen pictures of women who have lost their hair who look absolutely stunning. I'm not sure that I would be comfortable with that. I would probably be more inclined to do a wig and/or head coverings.

I found that assuming the worst helped me to be emotionally prepared with a plan if I did lose my hair. My hair thinned, but not a great deal. I did lose most of my eyebrows and had to learn some make up tricks for that. My sister in law knew that she would lose hers, so she found a wig she liked and then buzzed everything off. It gave her a feeling of being in control.

It's easy to think that hair loss isn't a big deal until we face it ourselves. It is for most people, though you are right breathing trumps hair loss. Keep us posted. I hope this trial is as successful for you as it has been for others!

Pat