Completely bonkers!: Hi everyone. Im from Nova... - CLL Support

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Completely bonkers!

Oceanbly
Oceanbly

Hi everyone. Im from Nova Scotia, Canada and I'm 60 years old. This is all so new to me. I recieved a call from my Dr last Tuesday (August 18,2020) and since then i have not slept for an hour at one time. Im extremely emotional and totally confused. I guess i dont show alot of symptoms yet, but my WBC is up and has been that way for several years. since 2017. I did have swollen lymph nodes in 2017 but was assured it was only infection. Now here we are in 2020 and after having a Flow Cytemery test done, because my WBC kept staying high, i am now told i have CLL Leukemia. I was just notified about appointments for a body CT scan and to have more blood work done before meeting with the cancer team in our local city. Im scared to death to close my eyes because i think i'll never wake up if i do. I guess after my meeting on September 10, 2020 i will know more.

61 Replies
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lankisterguy
lankisterguyVolunteer

Hi Oceanbly,

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Your feeling of panic and fear of dying is not unusual for newly diagnosed CLL patients.

We often say welcome to the club than none of us wanted to join.

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Please avoid using Google to find information about life expectancy with CLL, all the data is obsolete and will not apply to you. There are good sources of information like this set of short videos from L&LS Canada that provide a good basic introduction specific to CLL;

llscanada.org/cll-journey

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The most meaningful statistic is that 30% of folks that are diagnosed with CLL never need treatment and as long as they pay attention to avoiding infections (bacterial, viral and fungal) they can live a normal lifespan. Even when treatment is needed, most of us can avoid Chemotherapy, take a few pills each day and live close to a normal lifespan.

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So, I hope you can find a way to become more calm, while you adjust to the new reality (many of us have needed almost one year to reach that lofty goal- but you may be able to do it sooner).

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When you have more questions, please ask, and we can give you more reading and videos to use to learn about your CLL.

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Len

Thank you so much. It means so munch to be able to talk with people who are experiencing the same health issues as me. After my appointment I can share more info with everyone. Hope everyone is doing good and wish you all well.

lankisterguy
lankisterguyVolunteer in reply to Oceanbly

While you are waiting, you may want to read the "Pinned Posts" on this page, especially

healthunlocked.com/cllsuppo......

healthunlocked.com/cllsuppo....

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Len

Everyone has gone through the same as you are going through. It is the uncertainty but the blood disease is called CHRONIC Lymphatic Leukaemia.

That word chronic is so important. You will have to learn to live with it. Because you will live with it.

Now that the first step of diagnosis has been made you and the doctors will care for your chronic illness. I say you because staying fit and healthy is your job, the doctors will manage the CLL.

Best wishes.

Oceanbly
Oceanbly in reply to devonrr

Thank you so much! Yes, I am quite heavy and I need to get a good proper diet and exercise to get in the best shape I possibly can to help fight this.

devonrr
devonrr in reply to Oceanbly

I’ve always had a problem with the “phrase fight cancer” as with CLL I feel there is no fight because I live with it.

Remember the word chronic not terminal.

Lots on this site about exercise and diet. I always say a healthy diet with the occasional sin. Works for me.

ClassyLady3
ClassyLady3 in reply to devonrr

I agree, Oceanbly, this site and the members have helped me learn to live better with this disease. Please know that it is possible to do so.

Anxiety is not your friend. Try and stay calm and cool. There are so many excellent therapies for CLL now .

The combinations with Venetoclax are providing excellent durable remissions.

You may not need treatment for sometime , usually when your wbc and alc double in 6 months , it’s a sign for treatment starting

You will be in watch and wait for quite sometime most likely

Oceanbly
Oceanbly in reply to Canuck901

Thank you! I will let everyone know what happens as time goes on.

studebaker
studebaker in reply to Canuck901

Canuck is your Dad in combination of Acalabrutinib and Venetoclax?

Dana

Hi Oceanbly.......everyone here understands your fears and concerns, we`ve all been there and still are. CT scan is good as it will show what`s happening with liver and spleen and other nodes. I go for mine on tuesday having been diagnosed 9years ago.

Easy for me to say but try and relax......take one day at a time.

Plenty of people here to help and support you {{hugs}}

Oceanbly
Oceanbly in reply to nanasu

Thank you so much! It means so much to me to have people to talk to that are experiencing the same as me. I'm starting to feel better as I read more.....god love you all xo

Hi your feelings are what most of us experience when we here the words Leukemia. Suddenly our own mortality hits us in the face. I know I was terrified when I was first diagnosed which was 9 years ago now.

You will come to terms with your diagnosis eventually but you need time to process the shock and gather information about your disease.

CLL is a chronic slow growing cancer therefore not the immediate threat to life and limb you think it is right now.

At least 1/3 of us live their lives without ever needing treatment. Even if you do need to be treat the new treatments are proving very successful and less toxic than the old drugs.

I have been on treatment for 2.5 years now after 6.5 years treatment free and have lived a normal life both pre and post treatment. I am 68 years old and am looking forward to a normal lifespan.

I hope your journey is a smooth one.

If you can’t manage your emotions speak to your haematologist and ask for psychological help. As a retired psychologist myself and a CLL patient who sought help when needed I know it helps.

Good luck

Ann

Oceanbly
Oceanbly in reply to annmcgowan

Thank you and I hope only the best for you! Yes, it's a total shock to our systems to hear those words from your Dr. "Leukemia" It was pure devastating! When my Dr called and said the word 'Leukemia' I automatically went into shock! My body went numb and it felt like I couldn't breath, swallow or move! I know I cried no stop for at least 3 days. Probably got about 4 hours total sleep in 3 nights. I was a complete basket case. As I started collecting more facts on CLL, I felt better . But now I am feeling even better yet finding this group! It is giving me hope and assurance. God bless you all...….

annmcgowan
annmcgowan in reply to Oceanbly

You have come to the right group for support and education. I don’t know what I would have done without it.

God bless you too.

Ann

Hi Oceanbly, I'm so sorry you are having such a difficult time. The process of being diagnosed with a cancer is extremely frightening and overwhelming and I can vividly remember feeling much as you do now.

Please try not to panic. I know this is easy for me to say and not easy to do. CLL can be very slow to progress and one third of us will never need any treatment at all. New drugs are coming along all the time if you ever do need treatment and if you read some of the accounts posted recently I'm sure you will feel reassured.

I would advise you not to Google as lots of the information is out of date. This forum is packed with responsible advice if you need it and the Admin are very knowledgeable.

I hope you have a doctor you feel comfortable with and you trust.

Please let us know how you get on. We are here to help if you have any questions - nothing will be thought of as a silly question! - or just need to rant. We have all been where you are now.

One final thought...when I was first feeling my way here I got very scared by posts about complications and side effects. Please try not to worry about something that may well never happen for you. One thing I learned is to make the most of every day.

Warmest good wishes.

Oceanbly
Oceanbly in reply to Ghounds

Thank you! And yes I was googling everything and anything I could at first and I think that made me feel worse with somethings I was reading. Now that I have found this group I am already feeling better because I am getting information from individuals who are actually experiencing this CLL. I definitely will post my journey as it goes on. Wishing you the best...….. xo

Great advice given by everyone.

You will feel much better in a few months and will get back to living your life. I was on Watch & Wait 12 years before anything got serious. Still doing great.

Most do not need any treatment for many years. Wishing you peaceful thoughts! 💕

Oceanbly
Oceanbly in reply to GMa27

Thank you so much! Wishing you the best...….xo

You’ve already received wonderful words of comfort. I can only add that this group has been a great help for us over the past 4 years.

The panic will pass with time, I promise! And never hesitate to ask any questions here....the best information available!

Dr. Google said I’d be dead in 5 years. I’m still here 17 years later.

lls.org and CLL society.org both have good basic information. Don’t get into treatments and complications on either site. You may never need that information, and treatments are changing very rapidly, so what’s new now will probably be old news if you ever do need treatment.

You didn’t say how high your WBC is or whether the count is going up or fairly stable.

Plan to be around for a long time.

They have not ever giving me any number on my count (I did ask) and when I ask what a high number was for WBC, the Dr told me to write any question down and ask them when I go to see the Hematologist. I did have swollen lymph nodes in my neck back in 2017 and was re-assured it was all good. Just a mild infection they told me. My count has been up since 2017 i'm guessing. Every time I got blood work done and ask how the results came back, my Dr. would say the results were great, great! Now im wondering...…… Take care/keep safe ((hugs)) xo

I am not the one in my case with CLL it is my husband of 40 years we too were caught off guard when he was diagnosed in 2016 but he has had a very smooth course and has only needed treatment several times without any ill side effects and he is much older than you and you were going to get the absolute best advice information and support from the caring and incredibly knowledgeable people here!

There is no amount of research you could do that you could find anything more than what you can get from the people here who are truly experts when it comes to CLL.It's easy for me to say since I don't have the diagnosis however I live it each day and walk with my husband throughout his medical course and treatment decisions we have made have been so much better because of the people here and the advice that we have gotten. So sorry for your distress but please know you have so much more life to live!

Oceanbly
Oceanbly in reply to Palmetto

Thank you very much. Wishing your hubby all the best!

Beliebte me No reason to Panic I was Terminal in 2017 Im still alive and 71 years now

Wishing you many more years of good health! (((hugs)))

Hi, I also have CLL, I was diagnosed January 2018. I was like you, it is totally understandable to be frightened. I'm very lucky I live in the UK, have a fantastic Oncologist and Oncology team who have supported me through my journey. I had FCR February 2019 and am now a year into remission. Treatment for FCR has improved so much in the last few years. I am also blessed to have amazingly supportive family and friends. My tips to you, get information from your Oncology team, it's tempting to Google for info but just use trusted sites like Bloodwise, MacMillan and Leukaemia care. Also, do talk about your fears either to family and friends or support groups. People with CLL can live long and happy lives. There may be a few ups and downs but you will find that you will develop a coping strategy. We are here to support you when you need it. Sending love and hugs. Xx

Oceanbly
Oceanbly in reply to Floxxy

Thanks Floxxy. At first I was doing so much googling that I think I almost wore the letters right off my keyboard, but after reading and reading and getting more confused I stopped. I cant believe how lucky I was to find this amazing support group. It has helped me go from a walking zombie to a "somewhat" relaxing individual. Love and appreciate you all... and wish you all the best! Sending (((hugs)))

Floxxy
Floxxy in reply to Oceanbly

I hope that it goes well for you, do let us know. You live in a beautiful part of the world, my grandfather came from Quebec and I've always loved Canada, hopefully this pandemic will subside so that it will be safe to revisit. X

I had a very upsetting introduction to CLL, after a routine blood test with my GP in the morning I have phone call in the afternoon to report to the local Hospital to be admitted with some urgency to see a Heamatologist . After the admissions process one of the junior doctors asks if I had any question I said what's wrong with and I was told CLL blood Cancer. So after a sleep less night in Hospital I was dischared without seeing a Heamatologis but with promise of a outpatient appointment. That was 4 years ago now on watch and wait with regular check ups / blood test,managing not worry to much.

Oceanbly
Oceanbly in reply to BobG40

Wishing and hoping you all the best . (((hugs)))

Hey Oceanbly. I am living in Yarmouth NS ( former Valley girl) and am under the medical care of hemotologist, Dr. Sue Robinson, which, if you are being treated at the Dixon centre, will most likely be yours.

Our experience is similar. Almost 2 years in now and I can only tell you from my experience, you head will settle into this in the coming months and it will get easier . Not having information and knowledge of your diagnosis and prognosis creates the fear and anxiety of the unknown.

I can assure you it's very normal to be all over the place with your thoughts and, depending on the specifics of your diagnosis, you will go through stages much like grief stages, or at least I did.

Sounds like you are asymptomatic, which is good. The test are going to give the dr and yourself the information needed to come up with the best plan for you.

This forum is invaluable as you will find out, a wealth of information and experience.

I would suggest not telling anyone you dont need to at this point. You are dealing with your own emotional reaction to this, and that's enough for now.

You will decide later what approach feels best for you. Or at least, that was my experience.

You are very fortunate to get follow up work done so quickly, it took months for me and I was quite sick.

Reading posts on this forum will ease your concerns and will be such an excellent resource for you, as it is for me.

Take care my fellow bluenoser! Keep us posted.

Shelley

Oceanbly
Oceanbly in reply to Hectanooga

Hi Hectanooga. Yes this is all so mind boggling. But talking with others who are experiencing the same things brings a settled feeling to me for sure. I'm in Bridgewater, NS . I'm sort of anxious to meet with Halifax QE11 Hematologist. Yes, Dr. Robinson will probably be my Dr also then. I'll be 61 in November. In 2017 I did have an episode of swollen lymph nodes in my neck but was reassured it was only a mild infection at that time. I'm so happy and glad to have found you. I shall definitely keep you and everyone posted and up to date with my journey. Take care my friend (Bluenoser) Susie

Oceanably: Onatrio here. I felt just like you did when I was diagnosed in 2017. Still strong and kicking in 2020 and palling lots of trips throughout the world.

You have found a wonderful supportive site tht will help you walk through your learning curve. In the meantime I want to say that you will be here for a very long time yet. CLL/SLL is not a very fast mover. Most of us have had it for many years and have not been diagnosed. MANY of us will never require treatment. Those of us who do need some, have many options to choose from and every year, there are new and better treatments.

Talk to your doctor about getting a prescription to ease you over the anxiety for now. Given a little while and more education, that will be easing up. In the meantime, ask us anything. We are here for you.

Hello, Oceanbly, so much great advice has already been given here, so I won’t add much. I was diagnosed in late 2017, after a routine blood test, but am still blessed to be very early stage CLL., and on Watch and Wait. The best I can tell you is what my cancer doctor said to me on my first visit....he simply said, “well, if you have to have cancer, you’ve got the RIGHT kind!” Those words I haven’t forgotten!

So much help has been given us here from all the administrators and others, that it is very calming. Hang in there, and may God bless!

Hi Oceanbly , we’ve all walked in your shoes . Being diagnosed with Leukaemia stops our world spinning until we breathe again . You have made your first step to being able to breathe by finding this forum where you will get the best support and information available. I was diagnosed 2 yrs and 8 months ago and if I hadn’t come across this forum once I adjusted to the shock , I shudder to think how I’d have managed mentally and emotionally . Ask any question and you will get a considered reply , no matter how daft you think your question may be . Take care and I wish you well with your upcoming CT scan and blood tests . All the best . Emer

Glad you found this site. Everyone so very helpful and supportive. Best wishes to you on your journey. It's really not that scary when you are armed with the facts. I was diagnosed last August and told that I likely had had it for years. Started on ibrutinib and other than some side effects the oncologist is happy with my blood work.

Hi Oceanbly, fellow Canadian here from Ontario. I was also blown away from my diagnoses being a healthy male, ate relatively healthy didn't drink excessive and don't smoke. I just found out during routine physical. Big Mistake is I went on Dr. Google and became petrified but soon joined groups like this and found a support group of people going threw the same thing. I am Trisomy 12 which is the middle of the road marker. I have had FCR and now I have been taking Ibrutinib for almost 3 years. It's been 10 years now and turning 74 next month I have been leading a pretty normal life, it hasn't been without some minor problems which have either stopped over time or with meds. have disappeared. I expect to be around for a few more years still.

I found that knowledge is key, ask lots of questions and believe in your health care system. Good luck with your journey, stay safe and enjoy life ( with precautions )

Jack

Oceanbly I see you have already had a lot of our members reach out, so I won't bother to say the obvious things you now already know. I'm just reaching out too, to show support that so many of us give to each other.

Relax is the best advice any of us can give to you, and the other is about exercise. I'm 73 and have battled with too much weight since I was 50; oh well. When we get to these ages and didnt get trim yet, it is unlikely it will happen; however, one cannot under value the importance of some physical efforts. Walking is very easy and is as good for you as most other workouts. The key as Ive been told is walking fast enough to get your heart rate up enough. If you do that then you will be fine. My advice is not to go too fast in your early walks; in other words, go slow at first and build up to a new level every five days until you get to a point with a good sweat. If you go too fast at first, you will resent the effort and not want to do it again. Before long you will be getting a solid work out walking. Try only one half mile at first, and then build to a mile. When you get your speed to a good level at the mile (maybe 20 minutes), then you maintain that. I know there are many on this site who will laugh at us with the 20 minute idea, but they likely don't know what it is like to let yourself get too overweight. So we go slow and build up and do good for ourselves.

You are in the beginning stages only of dealing with the CLL; although, I notice you said you had enlarged lymph nodes a couple of years ago along with high white counts. You sound like me. I wasnt diagnosed until April 2018, but I was having swollen nodes and higher than average white counts since 2015. I likely have beginning CLL back in 2016 and then diagnosed in 2018. You probably had the beginnings in 2017 and just was diagnosed. No big deal, because the road with Watch and Wait is a long one anyway; at least, let us hope it is.

Well, you have now learned you have a whole lot of people in your corner and you certainly aren’t alone!!! We welcome you!!!

Not much to add to what has been said....this is indeed a super great place to be.

I was diagnosed at age 47....31+ years ago and life is great. So many good medicines out there...lots of choices when and if the time for treatment comes. I have had treatment on and off for 17+ years and am currently back on Watch and Wait. I do receive IVIG every 4 weeks as I really don’t have an immune system of my own...the IVIG keeps me in a very good place.

Just remember we are all very different and we deal with different treatments. I agree it does get better with time but there will always be that cloud over our heads that will never go away....and the anxiety ahead of labs and appointments just never is fun as you are constantly waiting for the shoe to fall.

I now am able to say that my CLL had made me a much better caring person. Life is pretty special!

Panz 🙏💕☘️

Oceanbly
Oceanbly in reply to Panz

Thank you so much for reaching out to me! It gave me a really good boost to know how great everyone is and how we can help one another in words, actually events and caring. I am speechless and so thankful I found this site and for all the support everyone gives. Wishing you all the best. ((hugs)) xo

I can remember feeling the same way when I was first diagnosed. Please ignore the out of date information on Google. Come to this forum or the CLL Society for information and support. With the new treatments out there, a lot of us are leading pretty normal lives with bright prospects for a long life. Nothing I have been through felt as bad as the original diagnosis. Hang in there, be good to yourself. Wishing you the best.

Oceanbly
Oceanbly in reply to dmmck

Thank you so much! ((hugs)) xo

One year with CLL diagnosis. Stable numbers since then, keep your mind busy with other things because you will barely notice something strange but do your labs regularly. Sometimes I feel a little anxious but I can not waste time with it.

Oceanbly
Oceanbly in reply to velderve

Thank you! Wishing you all the best! ((hugs)) xo

Dear Oceanbly,

My heart goes out to you - I was there 14 years ago (and I'm still fine, no treatment).

I reached out and I found wonderful support and information through the Leukemia & Lymphoma Society office near me. I can connect you with someone there in Nova Scotia if you would like. In fact, I have emails for nearly every regional LLS worker in Canada if anyone else is interested.

One of the tricks of support for CLL is to understand what applies to our particular country - which tests we can have and which treatments are available. Countries are more connected now than when I was diagnosed, but that was confusing to me in the beginning. So I would encourage you to link up with someone in Canada.

If you are interested in more information, you are welcome to private message me and we'll go from there.

marcyh

Oceanbly
Oceanbly in reply to marcyh

Thank you so much! ((hugs)) xo

Sweetly, I totally understand. When my doctor told me me blood counts was a little elevated and he recommended I see a Hematologist. He made the appointment and when I got to the Hematologists office the sign on the door said Oncology, I freaked. But for the next 3 years I lived a relative normal life. I’m 73 and no one even knew I had any issues. I don’t know what your numbers are but mine started at 10,000.

2 months ago my numbers started to climb to 48,000 so I’m now taking a pill daily ( Imbruvica). I’ve have a few minor side effects that seem to be subsiding and I just got back from a 2 week vacation with my husband. I’ll be honest with you the hardest thing I have to deal with is the fatigue. I take an hour and and half nap in the afternoon when ever I can I work full time from 7-3. So I nap when I get home.

Don’t stress, CLL is painless and a bit inconvenient but I’m grateful that I wasn’t gifted with stomach or colon cancer.

I’ll keep you in my prayers. Let me know how your doing

Oceanbly
Oceanbly in reply to Neciaed1

Thank you so much. And I definitely will let you and everyone know my journey. Wishing you all the best! ((hugs)) xo

So sorry you have to navigate this diagnosis in the middle of a pandemic - just makes everything seem more desperate and frightening. Most of us have plenty of time to educate ourselves on this disease before we make any treatment decisions. CLLSociety.org has a lot of good and current information. We all understand what you are going through here, take a few deep breaths and steady the helm. Most of us live healthy lifespans with periodic treatment and the current treatment options are excellent for all CLL/SLL profiles. All the best to you.

Oceanbly
Oceanbly in reply to DoriZett

Thank you ((hugs)) xo

Relax and breath. I had a surprise back in 2014 when I was diagnosed. Following routine blood work, my husband asked for a copy of the results and it was noted that further investigation was warranted. I thought nothing of it, but we phoned our family physician. It was confirmed that I had CLL. I was referred to hematologist and everything is working out.

Initially and until 2017 it was watch and wait. My number became high enough and the lymph nodes in the neck area were large enough that treatment became necessary. I had no issues with the chemo and handled it well. I do have IVIG infusions on a regular basis as my immune system is weak.

This summer I have started Ibrutinib. I am having a few difficulties with the dosing, but then docs are great to help you work out the issues.

Please don’t worry! It is a waste of your energy. Listen to your hematologist, eat well and get plenty of exercise and good sleeps. The advancements that are being made with CLL are phenomenal.

Hi Oceanbly, please let yourself relax. You are not going to die in your sleep, unless you have something else you didn't mention. CLL is leukemia, and that scares all of us at the start. Then as time goes by we find out were still here! Do you see the number of members on this site at the top, right now it's 15718, tomorrow it will be more. We're not "dropping like flies"! Many members here are living with CLL for decades. I'm coming up on 5 years. It is just something we learn to adjust to. For some of us, we are sort of proud, because we still have normal lives and we are in control of our lives, not the CLL.

Because most people misunderstand our condition, many of us have not even told our friends and families, except for some very trusted and understanding close people who will be supportive.

Get a hematologist who specializes in CLL, enjoy life, live healthy, get some sleep!

Oceanbly
Oceanbly in reply to JustAGuy

Thank you! I appreciate the support and information i'm receiving. It is very helpful. Wishing you the best. ((hugs)) xo

Just relax. Today is a good time to have CLL.

I was diagnosed in 2013 and they gave me 5 years to live with death sentence for sure. There is no cure they said. Freaky isn't it?

I have now been CLL free for the past 2+ years. They still can't find a trace of it whether they check in the blood or in the bone marrow. The nodes are gone too.

I joined the CAPTIVATE trial where you get to enjoy Ibrutinib and venetoclax for a little more than a year. It worked like a miracle. And no chemo.

It's even better now. They have more meds and successful combinations of new drugs.

So don't let stress feed your cancer. Just relax. Get yourself a CLL expert oncologist. Time is working for you and the odds something bad happens to you because of CLL are pretty low.

Oceanbly
Oceanbly in reply to lamboman

Thank you! Great to hear things are going good for you. Hope it continues and wishing you the best! ((hugs)) xo

Dear Oceanbly,

I empathize with you, I was first diagnosed at the age of 44 in PEI by a not so nice Oncologist at the time. I am now living in Nova Scotia and I just finished treatment in February. I am so glad you have found this group, they are without a doubt the most supportive and informative group I am involved with.

Reach out anytime. 🤗

Oceanbly
Oceanbly in reply to Red49

Your treatments are in the city I would assume? It is so nice to have other individuals to share advice and thoughts with. Hope you all the best! ((hugs)) xo

Welcome--you have found a site with a great wealth of knowledge and compassion.

It sounds like you are going through some pretty standard initial testing. I, too had a body CT scan before my initial meeting with my doctors. I've been diagnosed since 2017 and I'm still in watch and wait. I'm very active, I teach high school, I have a family and every 3 months I get a blood test. You can do this!

Remember to breathe :)

Yes.....just breathe! Thank you so much! I work in a high school cafeteria. Grades 10 through 12. I am married with one son and a grandson. I have to get myself into some activity and get my diet more healthy. I enjoy walking and I will be joining the local center where they have walking groups. I will know more about how far things are gone once I get my scan and see my hematologist. Yes, every 3 months they told me for blood work. Wishing you all the best. ((hugs)) xo

Oceanbly-

Consider yourself very fortunate to have found this site so early on. As you have already experienced you will receive much comfort, support and knowledge here. I discovered this site into my third yr after dx. Had I found it sooner I believe I would have saved myself a lot of anguish and worry. You will adjust to this disease we all share and find much hope going forward.

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