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under 50 with CLL

Bwhnr
Posts: 1
Joined: Oct 2009

Anyone else out there under 50 w/CLL? Anyone with CLL and young kids? I'm in both categories, recently diagnosed and having a lot of ups and downs. Would like to hear from others out there especially w/r/to thoughts on treatment and stem cell transplants

liltazcat
Posts: 10
Joined: Aug 2006

My husband was told he had CLL at age 49. August 2006. His entire Lymphnode system was affected and he had enlarged lymph nodes in the arm pits, groin and neck (very noticable) Chemotherapy was given with Fludarobin and Cytoxan for 6 cycles. He had it every 21 days through the cycle. The enlarged lymphnodes disappeared after the first treatment and he had very little side effects from the drugs. After the chemo cycle they gave him Rituxan once a week for six weeks. This dropped his CLL almost to remission only a slight residual left. He still gets monthly labs done to keep an eye on his white blood count and he sees his oncologist every three months. It has been 2 1/2 years since his treatment ended and now his white counts are going back up (24,500 currently). The doctor plans to do another round of the Rituxan in the next few months. This time he plans to give a higher dose 3 times a week for two weeks. This is not a chemo drug, it is an antibody which attaches to the bad white cells and your body gets rid of them bringing the white counts back to normal range. Not many side effects from the Rituxan either, so we are positive. The only cure is stem cell transplant and he may have to have one someday but for now things remain okay. He works everyday, has no symptoms other than the elevated count, and low platelets. We feel fortunate that he lives a normal life and the only people who know he has CLL are those we have told. You'd never know to look at him. We know someone else who had it for over 20 years. Treatments for CLL are good and prognosis for someone under 50 are very good.

My husbands youngest daughter was 14 when he was diagnosed and I remember the fears and the thoughts of a shortened life for him. We didn't think he'd even see her graduate and now she's a senior in high school. We have grandchildren and hope he is here to see them graduate.

Best of luck to you and your family. Don't feel alone as there are so many CLL survivors out there.
Laurie

hopeful1234
Posts: 1
Joined: Jul 2010

I have cll since 2007 but feel good even tho my blood count is not. I will be 80 yrs old soon and am grateful for my friends and family and for a very good life I found your words most comforting and hope I will go thru it the way your husband did. I am trying not to cry as I type this because I am very scared. Wish me luck Sincerely Hopeful1234

tf168wife
Posts: 21
Joined: Mar 2009

I was 48 when I was diagnosed with CLL - that was 9 months ago. Our kids are grown, our youngest being just 18, but our other 2 kids are out on their own. I even have a granddaughter! I am in Rai Stage 1, Binet Stage B - watch and wait. What has your doctor told you? That will make a lot of difference in treatment. I totally understand your ups and downs. I still can't believe it!
If you are interested, there is another site - www.cllforum.com that is very informative for those will CLL. You can network and ask questions of other people with CLL.
Take care,
Vets wife

cuey
Posts: 2
Joined: Jan 2010

Hello,

I was diagnosed just after my 40th birthday with stage 2 CLL. 8 days later I started 6 rounds of FCR every 3 weeks. The biggest hurdle to get over was that chemo was not a cure and that reoccurance is likely. I have 4 year-old-twins, so was initially plagued with thoughts of not seeing them grow up. I found treatment pretty grueling despite a very supportive husband and being told that it didn't usually have too many side-effects. Feeling more positive today, expecially as latest tests have shown i'm in remission, although one of my doctors prefers to say 'under excellent control'. Trying to excercise more and eat healthily and keep it at bay for as long as possible. Who knows, maybe a vaccine will become available, but in the meantime they have located a donor for me, so if it does come back I've got a backup.

From what i've read CLL mainly effects men over 60 so it would be nice to chat with someone with a young family going through the same thing.

ladeebug565
Posts: 1
Joined: Dec 2009

I was dx'd in 2000 at age 39 through a routine blood test. Staged at zero and put on "watch and wait". In 2003, an enlarged lymph node behind my ear was biopsied and found I had low-grade b cell lymphoma. Back on watch and wait. The highest my white count ever got was 30,000, but went back to around 17,000 on its own.

In 2007, many nodes (under jaw, armpits, abdomen, chest) became enlarged and I was given FRC chemo. The nodes decreased in size and I was put back on watch and wait. I was given Neulasta during the treatment to boost my white count to the point I could continue treatment. That caused bone pain and I was given heavy doses of Oxycodone and Oxycontin. I was hallucinating and ended up dumping them down the toilet.

I was not told what to expect post-chemo. I ended up with extremely painful thrush in my throat and my white count was 230. Was hospitalized in ICU for a week. My bone marrow was biopsied (twice because the first one didn't work and the second they did with a CT scan). Once the thrush was under control, I was released back to watch and wait. Routine blood tests every 6 months.

The oncologist I'm seeing is not the same one that ordered FRC treatment, but she's the doctor I saw in the hospital. She blows me off and spends all of 2 minutes with me after I wait for 1.5 hours to see her each time. She has just been telling me I'm fine. I'm not fine. I have a hugely swollen lymph node in my armpit, swollen lymph nodes in my groin, uncharacteristic illnesses (bronchitis, pneumonia, UTI's). She said my IGG (whatever that is) is low and the only treatment is infusion and she said I wouldn't want it. I'm going to find a new doctor. I also want a CT scan and I want it now!

cuey
Posts: 2
Joined: Jan 2010

You should get to another doctor ASAP. Where are you having treatment now? It sounds as if you need to get it seen to immediately.

I was also not told too much about what might happen post-chemo. Yet again it was all so distressing in the beginning that it might have all wafted over me. Without FCR outcome was not good so no other options really.

I finished FCR late November 09 and my bloods last week showed I'm neutrepenic again. Had an injection to boost good white blood cells (goodness I should know all the technical works by now!)but still no better. Daily injections for three days now to give it a boost. Feeling quite run down with a cold I can't shake. Apparently Rituxubin(?) can have this effect on some people. I'm supposed to be better and can't face the thought of another infection and 3 days on an IV drip in hospital.

Also I get pins and needles in my feet(nerve damage), apparently another wonderful side effect of chemo. Hope this is not permanent.

BrendaH2007
Posts: 4
Joined: Mar 2010

I was dignosed three years ago. You need a good doctor! Iam not sure where you live. You can look up top hospitals for CLL on-line. I ended up going to University of Michigan for my second opinion. They have treated me well. You feel like part of a family there.I get checked every 6 months at Uof M and every 2 months at Providence Cancer Center in Novi, Michigan. They are also very good.
I hope you can get some help.

jgw7838
Posts: 18
Joined: Jul 2009

i was recently diagnosed, 43 yrs old and just went through a bout with squamous cell carcinoma of my neck ,did 36 rounds of radiation ,30 chemo treatments and now this ,need some prayers , thanks

luv2cut1's picture
luv2cut1
Posts: 285
Joined: Oct 2010

Hi,

My husband has had CLL since 2000 (watch and wait) and was diagnosed with SCC of the supraglottic larynx in 2008. Went through chemo/radiation. Feb 2009, SCC in neck (geographic miss on first treatment), radical neck dissection and chemo/reirradiation. Doing well now. CLL counts brought down temporarily with treatment for SCC. Please know our prayers are with you and if you have any questions, we will do our best to answer them.

Good luck and many thoughts and prayers.

Myka

BrendaH2007
Posts: 4
Joined: Mar 2010

I was 47 when I was diagnosed. That was three years ago. I have been fortunate, so far. I am in the watch and wait stage still. My white count is 72thousand but my other markers are good. I have three kids, but they are teenagers. I don't think it is easy for any member of your family, when you tell them about your diagnosis. I keep them informed after each visit and then it isn't a mystery to them. I would say always be honest with your family and get lots of support from your friends. I let my kids know that they can go to my doctor's appoinments anytime they want to.

If you get in one of the American Cancer Society groups, it makes you feel like you are helping the cause. You are sorrounded by positive people with positive energy. I have been in the Relay for Life since I was diagnosed. The American Cancer Society has many support programs and a 24 hour free hotline.The number is 1-800-227-2345.I hope this helped. Hang in.

just4kk
Posts: 2
Joined: Apr 2010

I am newly dx'd - age soon to be 47 a single mom with a 14 yr old son. At this point I am in the watch and wait stage...and that seems to be the hardest part at least for me. I have some symptoms, but my hemotologist and oncologist aren't concerned at this point....easy for them to say watch and wait, they don't have a young son to raise!!! Most days I am ok, but there are days when the what if's get me!! I am trying to take it one day at a time, and just live the life I have. The diagnosis made me realize that I can't take anything for granted anymore.

Take Care,
Just4kk

webprincess
Posts: 1
Joined: Sep 2010

My husband was Dx'ed with CLL in Sept 2005. He was only 32. He had a nasty bought with a flu that summer leading his Dr to test his blood. He was hospitalized because his dr freaked out (DH was feeling better by the time the blood count raised the red flag) and wondered how DH was still walking around with his WBC. I don't remember what it was then. A bone marrow biopsy and other blood tests later including a cat scan indicated CLL. First they were actually worried about PLL, which is worse, but thankfully it wasn't that.

We did visit UCLA for an opinion on a BMT but were told at the time he wasn't a good candidate for that. I think we should start revisiting that... see later on in my post. We also got a couple other opinions ranging from suggesting we W&W to immediate chemo.

Late in 2007 his WBC started climbing and we kept putting off treatment since he had no symptoms other than an enlarged spleen and lymph nodes. No infections or tiredness.

With a WBC of 500 he finally opted for treatment with FCR. He went for three rounds starting on Valentines Day and had a very good response after one treatment. His WBC was in the good zone by the end of the second treatment.

So then things were swimming along for a couple years. We finally decided to conceive and have a beautiful baby girl who is now 16 months.

So around her birthday in May he started feeling low energy. He was saying he can't keep up with her and we shouldn't have another baby. That news made me feel very sad, because no matter what happens, it would be nice to carry on the family legacy with two beautiful children. I would hate for her to be alone in the world, but that is a whole other discussion. He kept thinking of his own mortality and leaving already a wife and daughter to fend for themselves. I keep telling him first he isn't going anywhere and secondly we have family and friends. No one would let us "fend for ourselves." And wouldn't having a child be a bright spot in all this? So far it has!

He got an infection in his nose, like an ingrown hair, in June. We went to his oncologist and was told his WBC was back to 300. At that time Rick was feeling good so he turned down treatment. He didn't put together that the tiredness and nose infection was the first indication that something was "off."

So then he got the cough and lung infection that wouldnt' go away. He went on several different antibiotics. He had stomach issues and constant poo-ing/vomiting for a while. He couldn't sleep. His spleen was enlarged. He could feel it. I told him he needed to get back to his Oncologist instead of messing around with his GP and Gastro guy. Those conditions were secondary to his cancer.

And guess what, I was right. His Onc was on vacation so he had to wait until a few weeks too late to start treatment. I suggested he see someone else, but DH insisted his HMO requires he use this Dr. I find that suspicious, but DH is very stubborn. By then he was very run down, no energy, felt like he was climbing Mt Everest when walking from the lactic acid build-up, could not carry his daughter... it was terrible.

When he finally got in his Dr told him what I suspected, all his conditions were caused by the CLL. I think he was lulled into a false sense of security thinking only WBC would be an indicator of treatment... he said he wasn't even to 500 in June when treatment was offered. Well, by Sept he waited too long. He was sick and required hospitalization for his treatment.

By then he was in and out of the hospital twice (a bad place for a CLL patient to be).

So he went into the hospital for FCR. They inserted a picc line for the chemo. I was worried that might lead to an infection.

He never felt totally better. They released him on Monday and he was back in by Thursday with a 103 temp, mouth sores, feeling weak, sore joints. Turns out he got an infection. DH thinks he picked something up in the hospital. I am not surprised. He responded really well to the antibiotics and his WBC indicated they were normal, but now neutropenic. He sounded better than he has in months. He wanted to leave. His Onc and the Dr on call agreed he could go home, but the infectious disease doctor said he should stay because he is neutropenic. DH had to sign a release to go home because of that.

We both agreed that neutropenia is a result of the chemo and no amount of hospital stay is going to cure that plus he wanted to get away from those germs and go back home to the germs that know and love him, LOL. Besides he could be neutropenic for the entire course of the chemo and I am sure he couldn't stay in the hospital for two months!

Anyway, that is our story. Please don't stay in watch and wait too long before seeking treatment. Undergoing chemo is hard enough. It's worse when you already feel terrible.

Yes, we are concerned about "going to the well" too many times with the same chemo, especially since it has been only 2.5 years since his last one, but we don't see another choice at the moment. Also, if you are feeling tired or the slightest bit unwell, see the onc first. Don't push yourself acting like everything is "normal" because its not! Hopefully he will stay in "remission" longer this time.

I pray for own version of "Gleevec" to be invented soon! Wishing everyone a full recovery/remission!

luv2cut1's picture
luv2cut1
Posts: 285
Joined: Oct 2010

Hi,

My husband was diagnosed with CLL in 2000 at the age of 39. He has been watch and wait ever since, even though his blood count reached 160K. He has had enlarged lymph nodes and spleen, but his quality of life has not been affected. In 2008, he was diagnosed with head and neck cancer, SCC of the supraglottis. Received chemo and radiation. In 2009 he was diagnosed with the SCC in lymph nodes in his neck (geographic miss from previous radiation), had radical neck dissection, chemo and reirradiation. He is doing well now and CLL counts were down in April (he has another checkup in November). When he was diagnosed, our kids were 11 and 15. They have been through all of it with us - the uncertainty, the head and neck cancer, the whole works. We are hoping that with the advance in treatment, the CLL will be manageable for a long time. We wish you the very best and hope that this site will be a tremendous support to all of us.

Myka

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