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CLL patient
NanJ
7 Posts
I'm a 50 yr old who was diagnosed with CLL this past summer. I've always been active and sometimes struggle with tiredness and sore back along with having swollen lymph nodes. I am thankful to be in the watch and wait stage while I prepare by making life changes and continue to take care of myself.
12 Replies
Brighty
7731 Posts

@NanJ welcome! I'm so sorry you have to be here but we will support you in any way we can. Under ‘forums’ ‘cancer types’ ‘lymphoma ’ there are some discussions you can join. Im just heading out the for now but during my breaking im going to look up some members to connect you with.

Whitelilies
1667 Posts

@NanJ Hello and welcome from ON! I am sorry for your reason to join us here; but glad you did. You have found a group of people who are happy to listen and share experiences…and support one another. I will include a link below , hope it is helpful….you can read, of others ' experiences, similar to yours, and reach out/"tag" anyone, if you wish; simply type “@”screen name (no space after @) and a few names will drop down;select name you wish; turns to blue ; this is OK; they will receive your message.

How are you doing? In the watch & wait…..do you have a “next appt” lined up?

Please meet; @D1955 (also from ONT, giving care to her husband with a similar path, as yourself) @BLR @Samera (Also from ONT) and @Gbaygal (Also from ONT). thank you all so much…..if you could share your experiences (care giving experiences)….here, to support our new member……on a similar path…..from ONT……much appreciation.

Nan…..we are all here…to support you…..
Welcome Nan !

Whitelilies

#CLL

Samera
8 Posts

Thank you, Nan, for sharing. I was diagnosed with CLL in 2017 and am still on watch and wait although I do have swollen lymph nodes in the groin and neck. I was also diagnosed with breast cancer last year for which I had to have two lumpectomies and removal of three lymph nodes from breast. It was a shock, but I was relieved that it was in stage 1 and I got away with radiation and no chemo. I was told that the breast cancer had nothing to do with the CLL and that it was simply a random occurrence. It is good that you are on watch and wait and again, thank you for sharing.

Gbaygal
4 Posts

@NanJ

Welcome from Burlington Ontario. I was diagnosed in 2018 with CLL and was on the watch and wait stage until Oct 2021. I have just begun treatment with Imbruvica. My choice as opposed to FCR chemotherapy. So far only a few side effects which are manageable. The tiredness and weakness remain however. I meditate and walk every day, which really helps keep a positive attitude when I am feeling down. Daily life, for me, has not changed too much and I hold onto that as I read other peoples challenges and stories. Reach out anytime.

ges54
15 Posts

Hi Nanj, you have a great attitude towards your diagnosis. Through my husband's diagnosis of Non-Hodgkins Lymphoma we have found great information and resources at lymphoma.ca They are having a webinar on Dec 2 about “Watch and Wait” You can register here Registration (gotowebinar.com)

Stay informed and stay positive,

Gail

D1955
69 Posts

Weclome @NanJ ,

As said , I am carepartner for my husband who was diagnosed 14 years ago. I also have a friend that was diagnosed with CLL 12 years ago. Both journeys were quite different. My husband's cancer was discovered by a routine CBC test . Low platelets (97) were noted so he was sent for blood tests every 6 months. My friend presented with enlarged lymph nodes.

Foe my husband, after repeated low counts he met with an oncologist where we were given the diagnosis. It was hard to digest that there was no treatment plan just watch and wait.

We were given permission for him to fly as we were gifted a trip to Austria in 2011. (High altitude flying with low platelets can be very dangerous)

He had his first platelet and IVIG transfusions in 2015 As his platelets dropped below 20 , we think it was a result of a cholesterol med that was prescribed.

We have had years of just watch and we have had time of wanting to scream . It is scary when in emerg and they say your platelet count is less than 3

He is still here we are still fighting to keep him here.

This journey will be long and I found that keeping a journal will really help. Our jounal goes to every appointment, oncology, GP, surgeons. I also keep a short version on my phone. Just in case we end up at emerg. After 14 years so much can merge together.

Do you have someone to go to appointments with you? We find that it helps. Because of covid I have had to attend via vidio chat and most appointments now are by phone.

Good luck with your journey. I will answer any questions you ask if I can.

Dee

NanJ
7 Posts

Thank you for sharing your selfless experience Dee! I definitely feel less ‘alone’ now that I've reached out and joined support groups. I've been with my husband since we were 17 yrs old but find he often ‘forgets’ I have CLL and not sure he realizes that it's a daily challenge trying to stay positive while taking care of myself and others, as I have done many times over! I admire your fight and appreciate you reaching out, it means a lot. Wish you many more fond memories to experience with your husband, now that your retired and I will reach out with any questions I may have, throughout my journey. Thanks again!!

NanJ
7 Posts

@Brighty Thank you very much for reaching out and your advice since joining forums is helpful for me, it actually helps me feel normal again 😊

NanJ
7 Posts

@Whitelilies I can't thank you enough for the support. Also nice to have contacts in my area going through similar experience. Feels good to have others to lean on when having a ‘bad day’. I've learned to accept it, finally (took me a couple of months) but now I value time spent with loved ones more than ever!! Take care and appreciate the welcome message tremendously! Have a great day😊

NanJ
7 Posts

@Samera Sorry to hear about your breast cancer. My swollen lymph nodes are in my armpits, near breasts, and in my neck so when I went for a mammogram, they noticed the ‘lumps’ but when I informed them that I had CLL they said that my cancer doctor would monitor and feel lucky that I don't need treatment, at this time. You're a tough cookie for all you've been through so far and hope you feel stronger every day 🙂 Thank you for sharing!!

NanJ
7 Posts

@Gbaygal Thank you for the warm welcome! I appreciate the support and offer the same back. Although I also continue to stay positive, I also allow myself to feel down when that's what I actually feel. I don't pretend anymore which is what I'd do before my CLL, I'd pretend I was feeling ‘fine’ on days I didn't feel good at all. This diagnosis has opened my eyes to how valuable life is. You seem like a strong person who will rock it during treatment so hang in there and reach out anytime 😊

NanJ
7 Posts

Hi @ges54 I have joined the webinar you recommended so thank you very much! Appreciate the info and will continue to stay positive during my journey but appreciate the support. Thanks again Gail 😊

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