Due to start treatment in October ,but not sure what to expect. Having feelings of things not being under my control is this normal?
Hi, recently diagnosed with CLL which was a to... - CLL Support
Hi, recently diagnosed with CLL which was a total shock. Trying to get my head a round the problem. Any advise on how to cope
Written by
Beano09
To view profiles and participate in discussions please or .
22 Replies
•
Hi Beano
Your reaction is totally normal. I think just about everyone feels as if they have been punched in the stomach when they hear the diagnosis. I can't help with what to expect from your treatment as it seems there are a variety of different strategies and drugs used, but I can tell you of my experience so far.
I was diagnosed last year and then put on watch and wait. I now need treatment within the next few weeks and have been offered a place on a clinical trial or the 'standard' NHS treatment. I know that the trial would involve monthly rounds of infusion/s + tablets (depending upon which side of the trial I get allocated to). If I'm suitable for the trial I think I will go down this route, as the side effects are apparently less than with the standard treatment. When I was first diagnosed, my GP thought that if I ever required treatment, it would likely be just tablets, but really didn't know much about the condition. I'll be asking my consultant lots of questions comparing the options I've been given when I next visit on Thursday.
Regarding coping - I was advised not to search the internet for information about the condition as I would 'only scare myself'. I took that advise at the time but did go to a Maggies Centre for general support and help with coping. Clearly if you are at the stage of needing treatment, then you probably will want to know more and from reading these boards (I've only just joined!) it seems there is lots of reliable info out there. If you are in the UK and can find a Maggies near you, I would strongly recommend giving them a call or just dropping in. They are brilliant!
Hope that helps a little.
Dee
Thanks Dee, glad it's not just me that feels this way.like you just joined the forum (today in fact) finding lots of info on here and will contact. Maggies ,there is one near me in Oxford. Thanks once again.
Hi Beano
Welcome to the community. Yes Maggie's offer a terrific service and the drop in centers can be very helpful. We do have an on-line meeting at Maggies on the first Tuesday of every month when several of us with CLL/SLL get together with others with hematological conditions. It is a good place to hook up with those who understand. CLL/SLL is a relatively rare disease so in general gatherings you may find it difficult to gain contact with others experiencing the particular challenges that we may face,,Here's info if you wish to register for next time round.
community.maggiescentres.org Register with the site and then the group first. goo.gl/fCXOqd and you will be able to join the next meet.
Coincedentally we will all be in Oxford in October - The 15th October is being discussed for the next CLLSA meeting at the Doctorrow Hall at St Edmund Hall College , Oxford. Followed by London on Dec 3rd at St Bartholomew?s ,London.
Dr Anna Schuh and team will be hosting the event with us
The invites have not gone out Yet as the dates have only just come through. I don;t know how this will fall in with your planned treatment. But hope you get a chance to join us if you register on+line at: cllsupport.org.uk/php_files...
Email invites will be sent out soon (when they come through) and you will be forwarded an information pack including current booklets.
I know that there is much on-line and seeking reliable information is daunting - I have highlighted PDFs of reliable and current UK patient information booklets in maureens recent post that you may find helpful.; healthunlocked.com/!/#cllsu...
best wishes
nick
NewdawnAdministrator
Hi Beano, just wanted to welcome you to the club you'd rather be able to cancel your membership of but well done for contacting and asking and sharing support.
I'm pre-treatment on W & W so I'm going to leave it to people much more knowledgeable than myself to talk you through preparing for treatment or what it involves. And there's masses of experiential info to help you with this.
It must be hard to receive the diagnosis and be propelled fairly rapidly into treatment and I hope you feel you're been given all the information you need to help you to plan psychologically as well as physically. That would be my main advice. Develop a good open communication with your clinical team and don't be afraid to ask questions and admit you don't understand or feel fear. No-one cares about our welfare quite as much as we do and when the time comes for treatment (hopefully at a much much later date), I don't intend to be a passive recipient. But I will be co-operative and hopefully trusting because I intend to seek a second opinion at that stage.
We can so identify with the feeling that 'things are out of our control' and if you're usually a person who is used to managing and controlling your own life, it hits hard!
I feel that whilst I can't directly control the CLL, I can learn to control my response to it and the measures I take to help myself. I haven't made major lifestyle changes but I'm trying to moderate certain aspects including taking it easier on myself where possible with more rest.
In terms of information, I'm trying to learn enough to inform and advise but not too much to terrifying me or promote false treatment hope. I hope you are able to do that too.
I'm sending you very best wishes for your forthcoming treatment Beano and would advise that you rely on the people you can trust, keep them in the loop and gain support from each other. The temptation to suppress things often impacts more negatively on our loved ones because they then start to imagine the worst.
Do you have a specialist nurse you can talk to? Remember Macmillan offer a great support service if you feel you need to talk issues through and can network you to other agencies that can help.
The good people on here understand your concerns and if you read through the responses to Maureen who is also newly diagnosed, you'll see that they are only too willing to support you at this immensely difficult time. Sorry for the long response but I can remember how brutal the diagnosis feels having received mine only last year.
Please let us know how things are going for you. Don't feel alone and be assured that your feelings are entirely normal.
Warmest best wishes,
Newdawn x
Hi Beano
I'm just going to say, that I am really glad you have found this group, where you will get so much support and information......I imagine you must feel a bit bombarded and overwhelmed at the moment.
Any questions you have, just ask away and people will be here for you.
Such a difficult time for you; I am sending warm best wishes and a hug!
sparkler x
Hi Beano09,
I was diagnosed in June 2012 and started treatment in July 2012. Yes, not much time to prep myself, not much time to fret either.
I had six months (Cycles) of FCR. Went off largely without problem (one minor own goal on my part). Assuming you are having the same (FCR) here are some comments from me that might be worth reading.
I've replied to others on this but at the risk of repeating/ boring...
1: The Retuximab days are 'long', so, no longer than working days but just sitting there could be boring. Take what will occupy you (magazines, books, laptop, MP3 player) to while away the time.
2: Six days of F&C after the Retuximab, this could be the worst time (although I didnt really suffer bad). A bit tired and fell dozed in afternoon in this period in first two cycles, but not more than 20-30 mins at most. Can have nauseau in this period, however again I didnt, but the hostpital gave me some pills for this that I took. They gave enough for the whole 28 days of the cycle but I stopped a couple of days after the FC finished.
3: Make sure you pick up any documentation especially any cards you will need to carry just in case something unfortunate happens. I got two, one that stated I was on Chemo and gave my consultant name/phone number, the second that stated I need gamma irradiated blood (Fludarabine causes this I believe).
4: All the staff were very understanding, so I always prepared structured list of questions and to get clear short answers, so I had what I wanted and did not take excessive time.
5: On first cycle expect some extra tests (I'm not sure everywhere does them), check in advance what they will be doing when. They will always do blood tests to check you are ok to proceed. First cycle I had a Bone Marrow Biopsy, I read a lot about how 'not nice' that was and scared myself, again, straightforward a little discomfort but did not even make my eyes water.
6: I was advised on one of my visits before treatment that what happens in the first couple of cycles pretty much sets the scene for the rest in general (not always). Seemed true for me, apart from the afternoon naps disappeared after the first couple of cycles.
7: The own-goal. So, I decided to monitor my temperature, weight and blood pressure at home daily. My choice, my GP thought it was over the top, but I like to track things. My electronic thermometer was reading 1C high resulting me ending up in hospital (overnight to check). Whilst there I checked it out with their thermometers and confirmed the problem. I now have a different one. That was the only real worrying time apart from the minutes after the initial diagnosis.
One final point, mentioned earlier, be cautious about what you read on the internet. There is gold dust and this is one of the places to find it, however, there are a load of hoaky people out there who's are out to make a fast buck and are positively 'dangerous'. Try to get to a UK CLLSA meeting if possible. (that was two points).
Feel free to ask any questions, I'll try to answer as best as possible.
rob
Thanks for your reply .Many helpful points made and you have given me hope for the future. Good luck with your next round of treatment.hope all goes well for you.garry
Garry, no more treatments for me, hopefully for a long time. My current plan is to stay in remission as long as possible and to enjoy life as much as possible.
The other thing you will discover is that there are more new treatments coming along in the next few years that should improve the situation.
Today is a gift, enjoy it (that's why it is called the present), I used to just smile at that but now I'm all for it.
rob
Glad to hear that you will not need any more treatment hopefully for a long time .Your good news gives me hope for the future.regards. Beano09
Hi Beano09. Welcome to the club. I think we may well be attending the same hospital, The Churchill, as I too live near Oxford. You could not wish for a better place for treatment, so many highly qualified consultants, I am under Dr Anna Schuh well known for her research in CLL. I am quite an old hand, like you was quite naturally shocked when first told I had CLL but here I am seven years later. I have had two sessions of chemo first in 2008 with FC second in 2011 with FCR. I then was chosen to go onto a maintenance trial but unfortunately, after several attempts, had to be removed due to side effects, I have just been told this partial remission now coming to an end my cells have started to rise again and lymph nodes swelling in neck and groin. I am not sure what treatment I can have at third line stage but in no doubt they will find something to knock it back again. Try not to worry too much you are in good hands
Love Roan xx
Hi Roan and Gary
I'm also under Dr Schuh and am looking at my first round of treatment having been diagnosed a year ago. I thought this was a fairly rare condition, but having come across 2 others with the same consultant within 24 hours I'm beginning to wonder! Roan - good to hear you are 7 years in. Keeping my fingers crossed that I'll get to see the grandkids grow up. Can you give me some idea of your experiences of FCR as I've been offered this or a clinical trial?
thanks
Dot
First of all, take a deep breath...
If no one has told you, you've been diagnosed with the "good' cancer. I know, it's hard to believe, but a LARGE majority of CLL patients go five to ten years before beginning active treatment. I'm at seven years since diagnosis and still in W&W. (watch & wait) Plus, there's a LOT of neat new drugs that are showing great things regarding CLL. Take heart!
Yes now understand that it's a good one to have if you have to suffer from cancer.Not that I really want it but hey sometimes you get no choice.I am slowly coming to terms with my condition and looking forward to fighting it all the way.I have decided the way forward is to be positive and hearing from others who are winning the battle helps.
Regards Beano
Read the recent speech about CLL at the Leukemia & Lymphoma Society at:
programs.rmei.com/llscll658...
I live in California & they say the ones that are bothered the most by the earthquakes are those who think that they are in control of their lives. Being diagnosed with CLL is like being hit with an earthquake. Suddenly we have to accept what just happened. That takes awhile. I immediately concentrated on the word "chronic" and it helped. So far my only health change is the fact that insects love me and the itchy bites take weeks to heal.
Hi Beano,
I hope you are beginning to see that there is life after diagnosis. I was diagnosed 19 years ago. I have had a Stem Cell Transplant (SCT) and a Donor Lymphocyte Infusion (DLI) - a top up of T-cells when the transplant is failing - so life has not always been easy. But, although the knowledge that I have CLL is always there, I do not let it dominate my life to detriment. Instead, I remember how precious life is and live it, within my limitations (which are less now than in previous years), with joy and gratitude.
Everyone's experiences are different but I have derived much support and knowledge of the condition from online forums and treatments are advancing much more quickly than when I was first diagnosed (at 37 years old). However, I try to keep everything in perspective. I still have CLL but I am lucky to be feeling well now, able to work again after many years of not being able to, have a lovely husband who has supported me through everything, 2 wonderful children that I have given birth to since diagnosis (I was pregnant with the first when diagnosed), who I have chance to see grow. One is now studying Medicine at university.
I have many blessings to be grateful for and, perhaps, am more aware of because of having CLL.
I hope treatment goes well for.
Best wishes,
Val
Hi Beano09
I was flicking back through posts and questions when I reread your question and all the answers. I think the folk on here are so helpful and caring, and I'm sure it helps. I see it is already a month ago and that you are due to start treatment next month so just wanted to say that I hope all is going ok, and that the treatment goes well, and that you are feeling less shocked and more positive.
Very best wishes
Bub
Beano09 in reply to
Thanks for the kind thoughts, yes I am feeling much more positive now and not worrying so much.I. Take each day as it comes and not going to think about the treatment in October untill October. Once again thanks for your kid thoughts.
