Post on behalf of my mom : CLL Diagnosed 2021 , Mutated , Trisomy 12 - W&W for now

[gopalansree]

Hello everyone,

I joined this community , acting as a primary care giver for my Mom .

Mom is 71 Years old going to be 72 in a month ...

She has a history of BreastCancer (Stage 1a) that has been in remission for 3 years now . A follow up on routine blood work revealed her CLL diagnosis in Sept 2021 . So we are still processing the double whammy within a relatively short period of 3 years...

I was able to get her Onc to get some base CLL tests done though and the positive thing is she has a Mutated status of IgVH BUT she does have Trisomy 12 anomaly . No other anomalies . Her oncologist has been dismissive of our fear and apprehension and it pains us a bit to be in a position where we are second guessing whether the onc knows what she is talking abt ...

I realize that CLL has a very very "diverse" set of progression pathways for individuals diagnosed with this condition. But I am looking to provide some mental support , offer some emotional strength to my mom ( and to myself as well truth be told..) with regards to the prognosis of her condition.

Her chemo from the BC , gutted her strength emotionally , mentally and physically... so much so that post this CLL diagnosis , she is afraid to so much as make international travel plans over the next 6 months over fear of needing treatment .

Anyone else on this forum that can share their Wait and watch experience and how long was it before initiating treatment ?

Thanks and Regards

KG

[SofiaDeo]

Welcome and sorry you have to "join us". Sad that your doc came across more as "dismissive" than reassuring your mom isn't in urgent need of treatment, so there is less cause for concern.

Unlike most cancers, CLL often doesn't need immediate treatment. And since it's a rare cancer, your onc likely does not have much experience treating it and would not know how to be reassuring, or what various parameters really mean.

We have a Pinned Posts section you both might want to peruse. It talks about the basics for this disease state.

healthunlocked.com/cllsuppo...

Another pinned post section by CajunJeff, is a series of "CLL topics for dummies" which gives analogies for a number of the technical, scientific concepts.

healthunlocked.com/cllsuppo...

Whether or not to plan for the trip, is IMO a highly individual decision. I think the biggest issue is "infection risk and control". Catching something infectious while traveling and needing to deal with it, is possibly a bigger problem than any strictly cancer-related thing. IDK where you are geographically, but I wear N95/FFP2 on public transportation, I travel with air sanitizers/HEPA type filters for hotel or other sleeping area (even have a small one in my car), and wear a small unit on airplanes. I put moisturizing eyedrops in, or wear wraparound type glasses when in public, to block anything possibly getting to me through my eyes. Since these precautions "approximate" what researchers studying and dealing with infections do, I believe it's reasonable. I'll mention I worked setting up potentially infectious patient specimens in college, at my University Hospital's Microbiology Lab for years as a Work-Study Student at my Alma Mater. If there was an infectious spill, we put on protective clothing, eye goggles, N95/FFP2 masks, gloves to clean it up. So I personally am pretty confident I am doing a better-than-average job avoiding pathogens. And why I make the recommendations I do.

[1ofakind]

We’ve all become so much more aware of contagious diseases since Covid and that’s the new reality !SophiaDeo ‘s response is great because it gives us a way of enjoying traveling and life even with CLL…..

[LeoPa]

What are her WBC numbers? Time to treatment is very difficult to forecast. You will get a better estimation once you have an idea about the rate of progression.

[lankisterguy Volunteer]

Hi gopalansree,

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As SofiaDeo said, since your Mom has CLL, her need for treatment will likely not be urgent or appear suddenly during travel.

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However everyone with CLL is immune compromised, so we can require urgent treatment for infections - whether bacterial, fungal or viral like COVID-19. So protecting herself from those is an essential part of safe travel.

( I contracted whooping cough / pertussis just before a vacation in Turkey and had to travel home early to get diagnosed and treated).

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If you are concerned that her doctor is not up to date on dealing with CLL, you may want to view this pinned post: healthunlocked.com/cllsuppo...

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If your Mom is in the USA - she can get a free 2nd opinion from a CLL expert here: cllsociety.org/programs-and...

If she is in another country, please let us know where - or edit your profile healthunlocked.com/user/gop... to display that information so we can suggest how to obtain a 2nd opinion where she resides.

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Len

[Ptown]

Dear KG, First of all, our community welcomes your beloved mother and you to Health Unlocked. What you will find here is an amazing group of compassionate, knowledgeable and emotionally generous people who support each other through shared experiences, technical knowledge, helpful tips for navigating our various health systems and the occasional photo of wildlife or beautiful scenery.

Here you or your mom can ask any question you have and then people will respond promptly to help you. You can feel free to complain and rant, too, and we will understand.

Tell your Mom that I was 54 when I was diagnosed when I had a complete physical post menopause. It was so surprising to have a condition that I had never even heard of. My identical twin sister immediately had her blood checked and thus far, has not developed CLL. Unfortunately, I had to retire early from teaching 5th grade as I was repeatedly getting cases of bronchitis. I am now 62 and live life very carefully in terms of avoiding crowds, sick people, masking up in public spaces, etc. Our only child is in graduate school a16 hour drive away so my husband and I drive there and back.

I have not had any treatment thus far, so let your mom know that, too. Prior to the pandemic we travelled several times to Europe, Galápagos Islands, and around the US. I always wore a mask on trains, planes and buses and always booked theater tickets in the back row so no one could cough on me from behind.

KG, let us know how your mom ( and you!) are getting along. We take special interest in caregivers, too. Your Mom is always welcome to come to us directly when she feels up to it. We get that it is a lot of information and a real emotional jolt when you are first diagnosed.

Sending rays of support to you both. Carolyn