Thank You, Administrators and All!!: Finding... - CLL Support

CLL Support

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Thank You, Administrators and All!!

Johne1
Johne1

Finding this Community has been so helpful, on many levels.

AussieNeil, Jm954, and Newdawn, thank you for all your answers and great information you share!!! Just know, you all are very much appreciated.

I have learned so much in my short time here. It seems many of you have a good understanding of blood work results, tests, risk factors, etc. My doctors never explain my blood results beyond saying they look good, or your white blood count went up over 20 thousand and now we want to put you on chemotherapy.

It's here that I found out my CLL is a risk factor for skin cancer, for example. A doctor has never discussed neutrophils with me, or any of the other terms I'm being exposed to here. This place has shown me that I have a lot to learn.

@AussieNeil if I understood your explanation correctly in one of your answers, then those of us with CLL have lymphoma and leukemia, which are 2 different diseases. One is in the blood and bones, and the other is in the lymph system. Either disease can exist in a person independent of the other. Is that a correct understanding?

I really appreciate this Community, which is all of you. I don't feel alone with my disease anymore. I'm still anxious about my bloated torso because of enlarged liver and spleen. I've learned to expect periods of painfully swollen lymph nodes in my abdomen, which thankfully, my body seems to "clean up" on its own as it comes and goes 3 or 4 times a year. The fatigue and the hours sleeping my life away is destroying my quality of life. That has had the most destructive effect on my psyche, turning me into a manic depressive (or is it bipolar?). You all are a Godsend. Excuse me while I shed some mental anguish and sadness. One day I'm laughing, the next day I'm crying. It's a hell of a rollercoaster ride. God Bless You All, as you've Blessed me!!

23 Replies
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cllady01
cllady01Volunteer

Johne, if you will open your post and for your question to AussieNeil, place his name (retype starting with @ no space before the name).

That will alert him to your question.

Johne1
Johne1 in reply to cllady01

Thank you! Will do.

Jm954
Jm954Administrator in reply to Johne1

The tag for AussieNeil is still not working correctly on your post and I tried to correct it with no luck. It has worked on here however, so Neil will see this.

Jackie

Johne1
Johne1 in reply to Jm954

Thank you, Jackie!

You run a great site, a great service!

Jm954
Jm954Administrator in reply to Johne1

Thank you Johne1! 😊 We aim to please and help.

To all the caregivers, give your loved ones plenty of hugs. Getting a cancer diagnosis is getting a ticket on the rollercoaster. I didn't even know how depressed I had become until coming out the other side of chemo and getting my "spark" back. Doctors treat the body's health, but no one's treating the mental health. For those of us old and alone, "the invisible cancer" makes life even lonelier. Time to get off this pity pot and get on with my day.

I need to share this wisdom that an Angel shared with me. I met a young man in his early 20s dying of cancer 35 years ago. As if that wasn't enough, his fiancee, an EMT, was killed in a vehicle accident on her way to a call. He told me he was seeing a shrink to deal with his loss and impending death. Then, beyond his years, he gave me this wonderful gift of wisdom while I was in the depths of grief from losing my young son.

"Cry any time, any place. It's worth 5 minutes of embarrassment for a lifetime of peace."

cllady01
cllady01Volunteer in reply to Johne1

Johne, I agree with you, as I have found that most health problems that are not directly attributable to CLL are not of interest to cancer Drs. None have been rude, and do listen to the problem but only in a passing manner, and it is never again mentioned unless by myself. I haven't found any interest in a follow-up statement--except there is the need for the records to be updated, and that is done on a sheet prior to seeing Dr.

Have yet had the Dr. to have looked at the sheet--have had one RN who always had my sheet with her when she saw me in the Drs. stead, and ALWAYS talked about what I had checked on the list or added to be put in record.

If you are lucky enough to have an RN who works with your Dr. and you can see the RN at some visits, do so. Their training involves listening and hearing the patient. Drs. (especially Specialty MDs) are intensely focused on the speciality. And, of course, we want that to be be so.

I do find that a bit of a cry now and then can clear up some down feelings. Thank you for your sharing.

Johne1
Johne1 in reply to cllady01

You're most welcome. Thank you for sharing your experience. Good advice.

Hectanooga
Hectanooga in reply to cllady01

So true and so harmful. They are focused on the blood health , period, which I am grateful for but our health is so much more than the biological.

There is no support for mental health.

Sharing here sure helps me lessen the gap.

It's very understandable, Crying is what gets me through whatever is happening to me. It's the only thing that makes me feel better and releases my stress. Yes we have meds, therapists psychiatrists ect and it helps to a certain extent. Life can be really tough at times and people won't know for sure unless they walk in our shoes. My diagnosis in 2017 changed my life and I'm still in that rollercoaster fighting to get off. I wish you well harmony and peace, Johne1.

Johne1
Johne1 in reply to Sushibruno

Thank you. Big boys don't cry. We still tell our sons that. We're animals trying to be culturally civilized. For men, that means hide it or the world will see you as weak, vulnerable, prey.

Thank you for your honest and thoughtful post. Alone too! Some days are tough. God bless you.

Johne1
Johne1 in reply to Ghounds

"Honest and thoughtful" is therapy. Talking to anyone is therapy.

Spent years of my life overcome with grief, but I learned that talking about it to a stranger twice a year and having a good cry, got me through.

I wasn't totally honest. When that young man dying of cancer saved my life, I was on the brink of suicide from grief over the terrible loss of my son.

You can message me anytime you need a friend to talk to. None of us should have to go through tough days alone.

Jm954
Jm954Administrator in reply to Johne1

I’m sorry to read about all your struggles with losing your young son, infections and more. Yet, I get the sense you are not sorry for yourself, more full of compassion for others who might find themselves in a similar situation.

Your observation that doctors treat the CLL but often neglect the mind is true and our CLL experiences can be frightening. That’s partly why this forum is so valuable, we share our experiences and knowledge, we empathise and support each other as we travel together with our hidden cancer.

Take care Johne1

Jackie

Johne1
Johne1 in reply to Jm954

Jackie, beautifully put. Thank you and you take care, too!

Ghounds
Ghounds in reply to Johne1

Thank you for that kind offer. Likewise. I think intense suffering of the type you have experienced either drives a person inward or gives them compassion and a desire to reach out and help others.

AussieNeil
AussieNeilAdministrator

Hi Johne,

Thank you for sharing your life experiences and your appreciation of what you've learned from the contributors to our community. That's what we're here for - to help us all feel less alone and to share ways of helping us enjoy a better quality of life.

With respect to your question about CLL/SLL (Chronic Lymphocytic Leukaemia/Small Lymphocytic Lymphoma, CLL/SLL is both a leukaemia and a lymphoma, though it is strictly a Non-Hodgkin Lymphoma, in fact it's the most common adult form of this disease. Prior to 1994, CLL and SLL were thought to be two different blood cancers; if the disease was identified through an oncologist sending a bone marrow biopsy to a pathologist for identification, it was termed Small Lymphocytic Lymphoma. If it was diagnosed through a haematologist finding it in the blood, it was termed Chronic Lymphocytic Leukaemia. When the World Health Organisation updated the document used for the consistent international definition of blood cancers in 1994, the disease became known as CLL/SLL.

Clues to the commonality and how it manifests can be seen in the disease names. It's a chronic illness, it's a B-lymphocyte disease (lymphocytic) and the B-lymphocytes are small. It can appear in the blood, hence a leukaemia and/or in the lymphatic organs (nodes, spleen, lymphatic tissue), and hence a lymphoma. The cancerous B-lymphocytes have identical surface expression changes - the same flow cytometry test is used on blood, node or bone marrow testing and the same deleterious DNA changes are commonly found; 11q del, 13q del, 17p del, trisomy 12).

Some of those diagnosed with the 'SLL' form of CLL/SLL can see their disease manifestation change to the 'CLL' form, when the count of monoclonal B-lymphocytes in the blood exceeds the threshold of 5.0 or (5,000 in many US based labs). The disease originates typically in the bone marrow for CLL, or a node for SLL, but once past the early stages of the disease with SLL, the cancerous B-lymphocytes can be found throughout the body. The treatment is the same, other than with early stage SLL, where remission and even a cure, can be achieved through radiation treatment. CLL/SLL cells are less robust than healthy B-lymphocytes (hence the common report of smudge cells in blood samples) and very susceptible to radiation. Even with CLL, radiation treatment can be used to shrink the spleen or just one enlarged node, deferring the need for systemic treatment.

Neil

Johne1
Johne1 in reply to AussieNeil

Thank you, Neil ,for that in-depth explanation and all you do for us here!

You're a fountain of knowledge. I'm sure I'm going to continue to learn a lot from you.

Johne1
Johne1 in reply to AussieNeil

Wow! I had it completely backwards. It wasn't until after my bone marrow biopsy that I was told I also had SLL. I assumed, incorrectly, that SLL is a cancer of the bone marrow.

I've just joined this forum, and am already amazed at the depth of knowledge that Neil has and your depth of compassion, Johne1. I'm currently reading about different mushrooms that apparently have anti-cancerous properties. Reshi and lion's mane look highly promising. However, for CLL sufferers, it appears that we should NOT take turkey tail or beta glutans, which, although having anti-cancer properties, are likely counter-productive, as they increase production of B-lymphocyte cells, which is opposite what we want to do at this stage of development.

Welcome to the Community, Pogee!

Time to revisit mushrooms, eh? Interesting.

I feel the same way Johne1. Same issues, same experience with hemotologist. It's like pulling teeth trying to get info.

I also have disabling fatigue,nausea and joint pain and of course the swollen abdomen that is the icing on the cake... which has my quality of life at an all time low.

Please know you are not alone in this. My state of mind is like a swinging pendulum these days.

This forum continues to be a place we can learn, listen and share with fellow members.

I too have gained most of what I know about CLL on this platform.

Google can be a great source for info if you check sources but it can't speak to the many "spin offs" that are experienced first hand.

The admin. team are deserving of much praise for their dedication and support.

Johne1
Johne1 in reply to Hectanooga

I wish I was alone in this. Thanks for letting me know that there is someone else here going through the exact same experiences. I'm sorry to hear that you can relate, but like you said, this is a great site! This is my third cancer site and now I'm back here everyday. I learn, laugh, and cry here every day. I know I'm Blessed. Life could be much worse. And now, thanks to this site, life is much better. :<))

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