Frightened of having treatment when the time comes!!!

[helenolton]

I am frightened of having treatment when the time comes. After reading all these posts their is not a lot of encouraging news of living like a normal person after treatment. I am sick of people saying this is the best cancer to have ... I will keep praying that the doctors will find out what is causing us all to have CLL and I hope we can be treated with something natural without any side effects. I try a lot of things to stay healthy and I will keep at it for the rest of my life. My heart goes out to all the people on this site that are being treated, Thank you for all the information that you post for all of us in the Wait and Watch. Have a nice evening!! God bless everyone!!!

[CLLCalifornia-USA]

Hi Helenolton,

I was diagnosed 9 years ago and have a pretty normal life. I have had two separate rounds of chemotherapy and will be facing a third treatment sometime this year. I enjoy life, friends, my children and grandchildren, my two yellow labs, several hobbies, yoga and the list goes on. We're all very unique and CLL treatment is different for everyone. Everyone has something. For us it is CLL. I'm not defined by CLL. It is just a condition I have. There are still so many facets of me! Don't let fear rob you from enjoying daily life. Life goes on and it is beautiful every day.

Kindest regards,

Sally

[mutamer in reply to CLLCalifornia-USA]

Sally and all,

It's been 3 yrs. for me and I'm still in the "watch, wait and worry" stage of CLL. What you said Sally, is just what I needed to hear today...so uplifting and hopeful. You radiate positive thinking and that will help us as much as medical treatment. And you have 2 labs...I have 3 "Santa Fe blends" (I live in Santa Fe and they're from the shelter.) Dogs are miraculous healers and companions...just looking at them releases oxytocin...we can't help but feel better. I volunteer in the "Chemo Suite" at our Cancer Center and try to make patients more comfortable in their treatment by cuddling them with warm blankets, putting pillows wherever they like, offering drinks and snacks, adult coloring books...and most importantly, conversation with compassionate listening when they feel inclined. It all helps me as much as them. And Helen, I do believe that we are fortunate to have CLL as opposed to some other cancers...so many new and better treatments. We can even lead full and long lives.

Blessings,

Cheryl

[CLLCalifornia-USA in reply to mutamer]

Thanks Cheryl. Life is about choices. I choose to live my life with as little worry as possible. People die every day. Car accidents, heart attacks, etc., we're all going to die sooner or later. Worry doesn't give us an extra minute of life. Life is meant to be lived! Sounds like you too make every day count. My yellow labs helped me through chemotherapy. We enjoy our daily hikes and time together. I find that volunteering takes my mind off of me. I volunteer at an upscale thrift store that supports animal rescues. I wish I had a volunteer like you when I went through chemo. I'm sure you warm many hearts. Blessings to you also, Sally

[Rpshe1]

I completed treatment the end of March. I can honestly say that I feel more normal now than I have in a long time! This all begin about 5-6 weeks after my final cycle of BG, I go next week for ct scan and possible BMB. I'm expecting good results, as is my specialist Dr Sharman.

[Ellieoak]

When I was diagnosed in 2002 the only treatment was bone marrow transplant. I was on watch&await for 9 yrs. then had chemo. Now am on Imbruvica and am doing pretty good. Breathe and relax. By the time you will need treatment they will probably have a cure.

[sandybeaches]

Hello Helen, I can understand the emotions you are feeling, but what I would like you to clarify is what you mean by living like a normal person. I wonder if you are afraid that after going through the rigorous chemotherapy treatment, that there is the possibility of having to go through it again. Or that the immune system doesn't return to normal and that you will always have to be careful in the activities you choose to do.

I have to confess that my emotions go up and down and I too am sick of hearing I have the best cancer to have. I just chalk that up to complete ignorance about the disease, and insensitivity to the people that suffer from CLL

My hope for you is to stay well enough to not need treatment.

Sandybeaches

[Bubnojay]

Hi Helen

It's a natural feeling to be afraid of treatment, most of us would, I think, face treatment with some trepidation.

Many who have been on this site having achieved remission get on with living and rarely write having a new lease on life.

Try not to let your tomorrows take the pleasure out of your todays.

Life is too short.

Best wishes always

Bubnjay1

[Cammie]

Helen

Whilst treatment does have some side effects (as do all drugs) the chance of remission is high!

Whilst I understand the trepidation you feel as we all have the same feeling of the Unknown the positive effects on most patients far outweigh the discomfort of treatment and many patients sail through without too much trouble.

As has been said above you should not let cll define you as a person! You have a chronic condition but should should get on with life , in fact, because you have this condition your attitude to life should be much more positive than simply getting back to a normal life!

Live life to the full! Do the things you always wanted to do! Enjoy the company of your family and friends! Give a kick up the backside to cll!

Many people live a NORMAL life and get lost in the day to day rat race. We have the chance of doing extraordinary things because we have been diagnosed with this condition and take stock of the important things in our lives.

Don't be afraid of treatment when it looms welcome it as giving you a second ( or in my case third) chance to continue living an extraordinary life !

[yorkie19]

I had FCR treatment about 2 years ago and wish I had the treatment earlier! Like you I was very nervous about treatment but really it gave me my life back. I had no serious side affects, big lumps in my neck shrunk, and my energy level boosted so much. I don't know how long my remission will last but it is certainly good to feel alive again.

[Salohcin]

Hi Helen. I too am recently diagnosed and if I'm being honest whilst trying to remain positive I am still in that frightened stage. I have had those thoughts about I suppose if I have to have cancer this is the best one. Probably wrong thoughts as nobody should have to endure such a condition. I think though that these thoughts help me keep positive I.e. A friend was diagnosed with a different cancer at the same time as me and has a very poor prognosis. I also lost a good friend last year who had similar poor prognosis so I think in a bizarre way I am luck to get the chance to enjoy every single day. What I have found to deal with this confused frightened state of initial diagnosis is great strength and positive vibes from this community in particular that there is life after treatment. I also like that you can use this group to scream and shout and vent your frustrations and if you do then everyone understands, something you don't get from other as they can't possibly (thNk goodness) understand. I also spoke to a friend yesterday who has a similar condition diagnosed in 1998. He has has two lots of chemo over the years and he lives. Fantastic life sailing around the world. He also said that how much treatment has changed in those years and so much hope that it will continue to improve.

[Salohcin in reply to Salohcin]

A week after my CLL diagnosis I was told they had found N additional abnormality in my right lung. That did send me in a state of shock as I feared lung cancer on top of CLL. luckily I was told last week that this lump was not cancerous so I'm s happy bunny at the moment

Good luck to everyone with all that life throws at us

David

[wroxham-gb in reply to Salohcin]

That must have been brilliant news to hear.

Sue

[Salohcin in reply to wroxham-gb]

Thanks Sue, yes it was fantastic, now I can concentrate getting my positive head back into shape

David

[wroxham-gb in reply to Salohcin]

I think you are there!

Sue

[luckyboy-2]

Hi Helen

I was diagnosed in 2004 and had 6 rounds of FCR in 2010. I found the last two rounds a bit unpleasant, but otherwise OK with no side effects. Apart from constantly monitoring my temperature for the following year, I have lived a 'normal' life since. I have just had my annual check-up with my consultant and all my blood measurements are in the normal range. He tells me that 20% of patients have NO detectable CLL ten years after FCR. I aim to be one of those!

I often have days when I don't think about CLL (apart from my daily email from HU). I enjoy my children and young grandchildren, my garden, my golf and my local pub. Life is for living - we only get one chance. OK CLL is a bit of a distraction, and I know some of you have a rough time with it and through treatment, but there are worse things in life.

Hope your treatment is many years away.

Graham

[wroxham-gb]

Hi Helen

Having CLL is a scary business. Somehow We manage and manage well to live normally. did I read somewhere here that you struggle with medications?

Sorry if I've confused you with someone else. I think that by the time treatment is proposed your body is ready. Hopefully this will not be you and the you'll have a long time in active watch.

Best wishes

Sue

Forgot to say, one brave lady foradmitting it. That's halfway there.

[helenolton in reply to wroxham-gb]

I cannot take any medicine. When the time comes for me to take treatment it will be a very frightening journey. Thank you and enjoy your day!!!

[wroxham-gb in reply to helenolton]

Helen, if you haven't already find yourself the best Cll expert you can. It's the best you can do for yourself. Understand your position exactly.

Sue

[Bethan49]

Just about to start treatment.. Yeah ur rods are so encouraging. Positive mind set and knowing that so many are far worse off Spurs me on x

[Bethan49]

Hi Helen I was diagnosed last year at the age of 49. In process of getting first round of chemo sorted.... I'm viewing it as some 'time out' and a journey which will no doubt have challenges BUT also strengthen me as a person.

As other have said, cll is a chronic disease ... God willing not a life sentence. Chemo is a route to feeling better and living life with more energy and gusto.

Don't worry about tomorrow...enjoy life to the full X

For me my faith gets me through those times of anxiety x

[PaulaS Volunteer]

Hi Helen,

Thanks for sharing. I'm sure lots of us are fearful about having treatment, though we don't always admit it...

I've found it very encouraging to read the posts above, where people have had treatment and HAVE gone back to living "normal" lives again. As Bub has said, we tend not to hear from the folk who are doing well - they don't feel the need to visit this site any more - they're probably almost forgetting they have CLL. Which is great, though of course it's also great when they do visit and tell others that they are doing fine.

Sites like this are going to get far more posts from people who have problems, because they're looking for support, looking for answers... Those who are now fine, probably would rather put CLL stuff completely to the back of their minds.

Wishing you peace,

God bless you too,

Paula

[helenolton]

Thank you !!!

[goneblonder]

I feel the same way, I read and I pray for those who are there and my fear grows that that could be me...

[Peggy4]

I have just gone past my first year of (knowingly) having CLL. I think that possibly things seem a little negative to you as most of the people who have come through treatment are maybe not as in need of the support and therefore don't post very often. That's why I think it's important to still contribute to the forum, so as to help others through the trauma. I'm sure that all of us dread the day that 'it' catches up with us and unlike other cancers, we will never have the possibility of being cured (at least not yet!) BUT, we have to live with it so I try to make the best of it. Better to die living than live dying I think - we've really lots to be positive about helenolton. All is by no means lost. 😀😀😀😀

Peggy

[fieldmeadow]

Each one of us responds to the prospect of treatment in different ways. You say you are afraid - so you are probably in the majority - because nomatter how fully armed we are with information we don't know how our treatment is going to affect us directly.

However, in many cases the fear is worse than the actual experience. To slightly misquote Corrie ten Boom :

Worry does not empty tomorrow of its difficulties, It empties today of its strength and joy.

Look back at a situation where you spent days/weeks worrying about something only to go through that situation and find it was less fearful than you had expected.

I don't mean to dismiss your fears or make light of them but maybe it's time to "stop and smell the roses" before their petals fall to the ground and all those lovely moments are lost for another year.

Enjoy the summer and keep in touch.

[fayeander]

Hello Helenolton,

I am so sorry that you are frightened about the possibility of taking treatments. For each person it is a different experience. I am 69 years old and I still work, I only took the day of my treatments off and went to work the next day. Most of the time I tried to schedule my treatments on Friday so I would have the weekend to rest. I was fortunate to have my sister with me for most all of my treatments, as I am a widow and did not have my spouse with me. I was only nervous about the IV needle going in, I am not a brave patient when it comes to putting a needle in my arm.

I am a nibbler, so when they told me to eat a lot of small meals and eat between meals to keep my strength up, I was right on schedule with their advice.

I will be the first to tell you it is frightening and I was a nervous wreck each time, but I knew my sister was with me and I knew I had God on my side. He brought me through each treatment. His blessings and my Faith were working side by side. After six months of chemo I am still working and so far have good reports from my doctor.

My CLL was diagnosed in the early stages, I was the caregiver for my Mother for eight years that she had CLL so I knew my symptoms were not normal for me. Basically the fatigue was why I scheduled the appointment with my primary doctor to begin with and then on to the hematologist/oncologist. I did not tell anyone until I was diagnosed because I kept praying that it was not going to be CLL. When I left my oncologist I called my sister and told her, after telling my son. Everyone said I was brave to do all of that alone, no I wasn't, I was just as frightened as you are now.

Be brave and don't let this CLL get you down. Stay busy and most of all, keep a positive attitude. The positive attitude is 90% of your recovery and helping you kick this CLL.

I will be praying for God to give you the strength you need to overcome this fear you have. God Bless You!

[katier]

Helen....I was in 'W&W' for almost three years, then, all-of-a-sudden, it was TIME to start treatment and, Believe Me, I DIDN'T WANT TO DO IT, But as easy as it would have been to say 'no deal', I looked at my two Grandchildren, and all I could think of was 'what are my chances of watching my little girl graduate from HS? to see my Grandson finish College?' and,"chicken" or not, I decided to go for it! They are the reason I went through months of chemo therapy, various illnesses cause by being immune compromised, etc....but, every day I have with them is Worth It and I am thankful for having made the decision I did...I think you will too.(It wasn't so bad and my Doctor and Nurses were so wonderful, they made the experience as comfortable as possible and were fully aware of every nuance of my treatment). You'll be ok, Promise! Katier

[Seven6]

Hi Helenolton

I feel I am going to be contentious here but want to convey this. This is my second experience of cancer and neither time can I say it made me appreciate life more or be more aware of life around me. Before cancer I had a huge love of life so that appreciation was always there. For me there is something lost and I understand that wish for the "normal". Of course I am still normal, but a normal person with cancer. Perhaps normal changes as life's challenges arrive.

I wish you well on this journey. Sometimes fear is most prevalent when the event is some distance away, once it arrives it is not so scary. I don't know but I hope you find a way that is reasonably comfortable for you.

Thinking of you.

Seven6

[Peggy4]

Think I know what you mean Seven6. I tend to think of myself as the same old me - but different? Everything and nothing has changed? Life will never be the same again that's for sure. However, this IS my life now and nothing can change that (unless a cure is found). We can't do much about the hand of cards we're dealt but how we play them is possibly up to us. I am as frightened of the future as the next (wo)man and have not yet got to treatment. When I do I will heavily rely on the strength and knowledge I find here. So grateful for everyones input.

Peggy

[Carpenters52]

Hi Helenolton,

I was Diagnosed about 22 months ago, age 51 at the time.

And indeed I felt like you feel about your CLL, very much so!

I am about to embark on the "Flair clinical Trial" next Monday!

But I know it's not going to be a picnic, but I feel strangely carm about it all.

Including the CLL now that my time has arrived.

I don't allow myself to have any negative thoughts about it anymore.

Because I have learnt that that way of thinks big not help me at all.

Should get a decent remission, and that's all I focus on!

Positive thoughts all the time,

They are making real advances now!

All the very best to you, keep smiling😄

Regards

Kelly

[Fowey2009]

Hi Helen

I am sorry that you are frightened - I agree with Paula S that we tend to come onto the forum more when we need support, so you are probably getting a 'biased' sample of experiences.

I can honestly say that our life has been much better since my husband had his FCR treatment. Like others I felt that we were living under the sword of damocles during watch and wait. The treatment was not pleasant but we knew that in 6 months it would be over, and it had amazing results. We now realise just how much CLL had been affecting our lives, even before diagnosis. My husband is now full of energy (far more than for many years) and back at work in a high profile role with a lot of contact with adults and children (and so far has managed to avoid any of the infections which he succumbed to so easily in the past).

The experience of CLL has taught us to enjoy every day - none of us know how long we have regardless of CLL so we need to grab the positive from everything.

I hope you are able to find some peace and relief from worry

Best wishes

Beryl

[scarletnoir]

I think these posts once again show how different people's experiences can be.

In my case, worry in anticipation of treatment was far worse in many ways than the treatment itself - at least, once it's under way you just have to grit your teeth and get on with it.

The good news - in my case - is that, 4 years after treatment (BR, 4 courses) I am leading a completely normal life apart from the check-ups. In many ways, I'm enjoying life more now than pre-treatment, though not because of it but because it coincided with retirement (for my wife as well), so nowadays we can just hang out and do whatever we want, when we want. We spend a lot of time walking the dog, and enjoying the sea views in our home town - and will be off to France for 6 weeks soon.

I suppose that I'm lucky not to be suffering from any other medical conditions - so life is great fun (I'm not joking).

There were some downsides to treatment in my case, and it would paint a false picture to omit them. In summary:

1. infection after first dose and lowered WBC count - 9 days in hospital

2. skin rash - quite unpleasant - but got better with time

3. one allergic reaction during treatment (to rituximab, I think) and one afterwards to allopurinol - nasty stuff in my case.

However, these were really minor problems in comparison to the CLL itself, and after a compete remission I have no regrets whatsoever. I'll do it all again, if and when it becomes necessary.

[AussieNeil Partner Administrator]

Supportive post from Greygirl moved to where it was intended - a reply to your post:

I was diagnosed 2009 and used herbal therapy and accupunture and was doing good even with rising wbc counts I went downhill after getting serious pneumonia and eventually needing treatment. I hope it goes well for you and I know its scary to have cll but ibrutinib is a lot less harsh than fcr and I do like everyone else now -slow down take each day don`t overdo it" look at what you can do not what you can`t do" having a good oncologist who knows cll very well is important if it comes to the time you have treatment if you have any questions feel free to ask me but I`m not a doctor or expert but I`ve gained a lot just like others who have cll. greygirl

(Product reference also removed in accordance with our community guidelines - Admin)

[casanova]

Hi Helen,

Fear, anxiety, resentment and anger are all emotions I experienced on diagnosis and I would guess that all contributors on HU will have experienced some or all too. When the time for treatment came fear and anxiety levels rose again, I think this is only normal.

However, despite having a number of treatments, which have not been without incident, I consider myself to be lucky insofar as I do live a "normal" life between completion of treatment and the time to begin another form of treatment. My husband and I have extended holidays abroad, we walk and play sports, socialise with friends and of course enjoy time with our family and grandchildren. In other words I am lucky to feel well up to the time for treatment and I "shelve" my CLL whilst I get on with life.

The anxiety and fear will return as I approach the time to try a new treatment regime, but in the meantime I do enjoy life. I hope that you will find your equilibrium again and I wish you many years without treatment and the ability to return to a normal life albeit different.

Maureen