Ighv unmutated

[joann504]

Just got bloodwork results and it shows ighv unmutated. Have not talked with doctor yet but I know prognosis is not good . Have been crying and heartbroken all day.

[LovecuresCLL]

Please do not despair. There is hope for sure. Folks are going into remission and are unmutated. You found the right place for help. Find a great CLL doctor expert and stay with us. Keep reading.

LoveCuresCLL

[Ironj]

Just because your unmutated doesn’t mean your in trouble. With these new BTK drugs out now you’ll be fine if treatment is needed.

Try and relax we are all in this together and are here to support each other and share knowledge. There are plenty of great people with a lot of knowledge on this forum. Best wishes John

[Jm954 Administrator]

Hi, I can see you've had several types of treatment already for your CLL but not any of the newer non chemo types. You don't state on your profile which country you are from but I presume the USA, in which case you should be able to access them with relative ease if you need them in the future. As Ironj says, most people do really well on these new drugs so please don't worry.

If and when you need treatment please find a CLL specialist and get your genetics re tested to check for any new FISH mutations. You're going to be fine

take care

Jackie

[MsLockYourPosts Passed Volunteer]

Back when I was diagnosed, 17 years ago, there were very few treatments for CLL and they did not give long remissions for those with “bad markers”. It’s a whole new world now. The new non chemo drugs and drug combinations have leveled the playing field. Test results still seem to use the wording “poor prognosis” but I think that it’s time for that wording to be changed. There is even some question about whether some of the combinations currently in trials are in fact curing patients. The data is so new that there hasn’t been enough time between treatments and the present to document that as a finding.

Having a good cry can be very therapeutic, especially when the stress of waiting for results is over, just to let out everything we bottle up while waiting. Now it’s time to start learning about what’s up and coming. It’s really exciting stuff.

Get a copy of the booklet put out by lls.com and check out cllsociety.org Both sites have everything from the basics to the latest research. The Society also has a list of in person support groups around the US. If there is one you can attend I highly recommend doing so. It’s one of the best things I did for myself. Don’t try to digest too much at a time. You will have time to get comfortable with the information, and there is a lot of good information here as well. Hang in there! It’s going to be alright!

[lankisterguy Volunteer]

Hi joann504,

-

If you look at my profile you will likely see the upper end of results from being UnMutated : healthunlocked.com/user/lan...

Dx 2008 Trisomy 12, Unmutated, CD38+, Zap70neg, Notch1neg, VH4-39neg, SFB3neg,

Tx 2010 - Rituxan monotherapy => normal bloods for 6 months then 18 months Progression

Tx 2012 -2015 Idelalisib + Rituxan Phase 3 trial => 27 months minor symptoms - MRD dropped to 0.08% but by month 30 rose to 20%. ALC rose from 2k to 8.3k at month 30

Tx 2015-Stopped Idelalisib trial switched in 1 day to Imbruvica- 9 months relentless skin rash-

Tx 2016- Venetoclax - Off label. Nodes normal week 3 - 100 mg, Bloods normal week 5- 400 mg no symptoms, side effects or problems. MRD neg blood at 29 weeks, MRD neg marrow at 40 and 52 weeks, Paused Venetoclax Sept 2017, and restarted Venetoclax Jan 2018 due to MRD rising to 1%

-

To me it means that we need treatment more often, (and also - we may react faster to the new targeted treatments).

-

As the four previous replies have said- please assemble a medical team,

cllsociety.org/toolbox/buil...

-

lead by one of the CLL expert doctors

cllsociety.org/toolbox/cll-...

-

And get it in place by the time you need to choose your next treatment. The new targeted therapies mean that you can likely control your CLL with daily treatment.

-

Len

[BluMts]

Hi Joann, I don't think there is any need to be worried about your unmutated profile. I am unmutated as are a huge number of people on this site, its not unusual at all and I was recently told by my CLL Specialist who is well respected in the Leukemia field that with access to the new drugs we do not have to worry at all. I've been on Ibrutinib for three years and it has been super efficient at dealing with my CLL/SLL.

There other drugs, newer drugs that you'll read about on this site as well. And I see that earlier responders have given you good info for proceeding.

Please, please do not worry about being unmutated, your worry is based on reading old out of date information. Read other posts here and act with strength and a feeling of joy that good things are ahead for you.

[Rpshe1]

I too am unmutated. I was treated with gazyva and Bendimustine 2015/2016. April 2020 will mark 4 yrs since end of treatment. So far no signs of cll return. 🤞🏼I go another 4 yrs👍🏼

[DoriZett]

Hi joann504 -

I’m unmutated as well as 11Q deleted, trisomy 12 and Notch 1 positive. All, less favorable markers (as they are called vs. poor prognosis).

I was diagnosed in 2015, started treatment in 2017 and am doing well on Acalabrutinib with 93.8% reduction in lymph node size, which equates to partial remission. The only reason they don’t call it complete remission, is my lymph nodes were so large when treatment started, scar tissue won’t let them return to normal size. I’m doing well, my labs and CT’s are all great and I intend to ride this drug quite a ways down the road! And when and if it stops working for me, we’ve got dozens and dozens more already approved and in the pipeline. Keep the faith, educate yourself about CLL and treatments, and if you’re able to get yourself to a CLL Society support group, you will have many in person peers with whom to compare notes with, and learn. Support from this HealthUnlocked Community is generously offered and always available. Onward my friend. Happy New Year!

[GrumpyFrog]

Dear Joann,

I'm sorry you are going through this, but you have come to the right place for support! The people on this forum are wonderful.

Please keep in mind that "prognosis is not good" is a relative concept. It may be true that mutated CLL may have a somewhat "better" prognosis, but that does not mean that an unmutated CLL is so bad. Many people with mutated CLL are on "watch and wait" for years and, with the recent advances in therapy, get treated successfully and live long and productive lives. Don't despair!

[Smakwater]

I too am unmutated. After 6 months of Gazyva plus a year of venclexta, my bone marrow is clear of CLL and my quality of life is good.

CLL research has shown overwhelming amounts of positive data in the past five years, especially for those with high risk markers like unmutated IGHV, and 17p del.

Find a CLL specialist who stays current with the latest research data and you should find that your perspective is less challenged.

As you learn more about the specific attributes of your CLL and questions arise, you will find that this forum can provide resources to help you find answers.

I hope your days get better as you learn about overcoming the challenges of CLL and the treatment options available to you.

JM

[catnapcrew]

Sorry to hear of your tears. As others have said don’t despair- these new drugs are a game-changer or should I say life-changer. My husbands IGHV unmutated and FISH 17p del. 91% when he started on the I&V trial 3 years ago. After 9months his marrow and blood were clear. He’s still “in remission”. Stay positive and don’t worry too much about that “poor prognosis” notation - I too think that was relevant with conventional chemo for high risk patients but the new drugs have changed it for most. Have a good dr and specialist who are up to date with new treatment protocols and clinical trials when it comes time for treatment Happy new year.

[DelrayDave]

As many others have said, unmutated is no longer an issue. I am probably unmutated (CD38+) with trisomy 12. I was originally told this meant an aggressive disease. Indeed, chemo gave only a short remission. But by 2015 there was ibrutinib. 5 years now on it in remission and no sign of the disease. All the clinical trials on ibrutinib show that mutation status is no longer an issue at all, from what I have read. And there are newer drugs in the pipeline behind it.

Bottom line: your prognosis is almost certainly good . No one likes a "cancer" diagnosis. Scary. But CLL is unlike other cancers. Many of us have it now for years and a pill a day keeps the cancer away.