CLL leukemia: Just diagnosed, what can be done?

Hi @sonia85 From the doctor’s comment it looks like your mother has Chronic Lymphocytic Leukemia. (CLL)
This blood cancer is slow to develop and often doesn’t need any immediate treatment, sometimes for many years. She will have blood tests every three months to check for any changes. This is called “watchful waiting”.

I found an article online that discusses the Watchful Waiting for patients with CLL. You’ll be able to read that this is a very common approach to your mom’s disease.

So I would take this as a good sign that your mom is in the early stages and nothing needs to be done at this time. 🙂
Does this help ease your mind a little?

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Hello dear
Hope you Re doing well today
Thanks for god and for everything , and thanks for sharing this link it’s useful , it’s hard but I think we can make it easy if we didn’t fear , Lori as yesterday she listen to her doctor she known about cll is a disease he lives with it ,not like cancer , according to your opinion its ok to know about her Cll like this ?

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Hi @majid12 I sure wish there was another way to treat the Acute myeloid Leukemia for your wife. But that level of chemotherapy is the only treatment at this time that will kill the cancer cells.
The chemo kills fast growing cells. That is what acute leukemia is; rapidly reproducing, out of control, defective blood cells. It can be a very aggressive disease and the chemo needs to be equally as strong.

Yes, unfortunately losing hair is one of the side effects of these treatments. She also might lose weight as the drugs may make her nauseated. That’s what can make her skin look wrinkly, from the weight loss. But these side effects are temporary and her hair will grow back and her skin will look healthy again when her body is free from the cancer.

Your wife may be bleeding from her nose because her platelet level is low. Her doctors may need to give her a platelet transfusion and possibly a blood transfusion. Those are often necessary while undergoing treatment for leukemia. I had this happen often too. The nosebleeds were very common when I needed platelets.

I know this is a very difficult challenge for your wife. Our hair is often our crowning glory and a shock to lose it. I had long hair when I started treatment. I knew I would lose my hair so I had it shaved off by the beautician at our hospital. It felt liberating to have the hair cut off. That way I didn’t notice it falling out after my chemo.
Your wife will be beautiful even without hair! And it will grow back! Until it grows, there are lovely scarves, little caps and wigs she can wear if she feels more secure that way. I actually loved my bald head! Now, mine has grown in healthy and strong again. But it takes a lot of work. Being bald was easy. 🙂

Tell her she is much stronger than she thinks! The chemo is important so that she can live a healthy life again! The hair loss is temporary. It is more important to focus on having the cancer gone!
This treatment should start soon. Are you able to be with her?

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Thank you Lori, her doctor said she need morrow transplant SAP and we need to get a donor for her from her siblings, I can't donate to her because we are not match only from the family members can donate or the hospital will provide it but it will cost us more,
Did you go through all that during your time,
She's really suffering a lot, I'm going to be with her next week by God grace,, I'll talk to her to see if she can shave of her hair, thank you

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CLL Diagnosis at 80 Stage 0 Discovered Incidentally
I have very brief lasting chills — so I just put something warmer on for a few minutes and they go away. This happens most days and several times a day. Not scary to me — anyone else have this happen? Just curious !
Dr. Diagnosed me in 2020, but said it appears my CLL began in 2019. I am now 82 and still at stage 0. I also have morning nausea which goes away after eating.

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Welcome @alliefair. Thank goodness the CLL was discovered incidentally. I moved your message to this existing discussion:
– CLL leukemia: Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/cll-leukemia/

That way you can easily connect with fellow CLL-ers like @kegraves @pieter1961 @carl50 @mabfp3 @sandiegostu @annieg87 @teddytwo @shirlpat, who can share their experiences and if they get chills periodically throughout the day or nausea in the morning.

Alliefair, are you also under active surveillance and not taking any treatment specifically for CLL?

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CLL Diagnosis at 80 Stage 0 Discovered Incidentally
I have very brief lasting chills — so I just put something warmer on for a few minutes and they go away. This happens most days and several times a day. Not scary to me — anyone else have this happen? Just curious !
Dr. Diagnosed me in 2020, but said it appears my CLL began in 2019. I am now 82 and still at stage 0. I also have morning nausea which goes away after eating.

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Hi Alliefair, I was diagnosed with CLL in March and had a lymph node removed. I’m not receiving treatment currently but am in the Wait and Watch period with review every 90 days. Like you, I have periodic chills and morning nausea. I’m glad you posted because I haven’t known anyone with those same symptoms. God bless you in your CLL journey.

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Hi @majid12 I know you wife’s journey with AML and a transplant all too well. This type of leukemia requires some heavy artillery to win the war. But each battle is worth fighting. 🙂

She’ll begin her fight with at least 1 round of chemo for a week. The first one is called the Induction phase. It will be used to knock down the cancer cells in blood/marrow and hopefully get her into a temporary remission.

Then she’ll have a waiting period of about 28 days while her blood numbers rise again. After that, there will most likely be another round of chemo referred to as Consolidation. It helps to ensure most of the cancer cells are gone. Her type of AML is aggressive. So even though it looks like she’s in remission, it has a way of returning. That’s why the bone marrow transplant is necessary. Her old bone marrow failed to recognize the cancer cells. So they were allowed to proliferate. The hope is that the new immune system she’ll receive from her sibling will again recognize the cancer cells and destroy them. It’s really very fascinating.

If her transplant isn’t soon after that Consolidation, she may have another session of chemo again. It’s important to keep the body in remission so that most of the cancer is gone before going into transplant.

She may feel nauseated and lose her hair, like I mentioned. But for me, once I started chemo, I actually began to feel better because the cancer cells were dying off! My fever went away, I regained my strength and I started feeling human again! I was fit and ready for my transplant.

I don’t have many family members so I had to go through bone marrow registry for my donor. Transplant teams often look to siblings for the donors so you’re wife is fortunate to have some brothers and sisters. They’ll be asked for either swab samples from inside their mouth or blood samples to check for a match.
The transplant itself is basically a blood transfusion. But instead of blood, the bag is filled with stem cells and takes less than 1/2 hour to be infused through a port. It’s pretty anticlimactic considering all of the drama leading up to it!

Several days before the transplant can happen though, there will another session of chemo called Conditioning. This chemo prepares the bone marrow to receive the new stem cells from her donor. It’s necessary to clean out the old bone marrow so that the new, cancer free cells have a place to set up housekeeping. It takes a minimum of 10 days to reach engraftment and sometimes longer. That’s when the new cells start producing blood cells in their new environment.
Your wife will have a very compromised immune system while all of this is going on. So she will be taking a lot of medications to keep her healthy.

I know this all sounds complicated and intimidating. And it is… But her doctors and their teams of nurses will be guiding her through this journey one step at a time.

I’m so relieved that you’re able to be with her and I know she’s going to feel so much better having you home! She will be required to have a caregiver with her especially during the transplant and recovery period.
Has she begun her chemo yet?

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