Hi everyone since my last post about the skin problems , the biopsy had revealed it is from CLL and as a result my appointment has been brought forward and had to be seen at the clinic . After waiting for nearly 2 hours to see the Dr she just very abruptly told me that CLL is progressing and I will be going to have further tests and be put on treatment
I don’t know why but I was so shocked to be told this news the Dr was being so unsympathetic she just told me why are you so shocked you had 17 years of good run so why are you reacting this way
I am not sure if anyone would act any differently than me ,we live with this uncertainty and try to have a normal life and when you least expect it it just rear’s it’s head and hits you and turns everything on it’s head I am now waiting for further test to check my heart and other organs but it has been so depressing I cannot share anything with my family as they all get panicky but I’ll just have to wait now
Just wanted to update you all
God bless
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Altindal22
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Hi sorry to hear you need treatment now. Your reaction to hearing this is perfectly normal, especially having been on WW for 17 years. You must have begun to believe you were one of the lucky ones who never need treatment.I was told I needed treatment after 6.5years and I was in shock. I also had an insensitive Dr give me that news, which makes it so much worse to receive and process.
Please give yourself some time to take all of this in and be kind to yourself.
I am sorry to hear you can’t speak to your family as sharing the news would help so much and they may need to find out before you start treatment.
If you can’t speak to the family is there someone else, maybe a friend? If not and it becomes too much to deal with alone seek help via your consultant or GP, I did.
In my experience treatment has not been the negative experience I had anticipated. I chose to enter the Flair trial and have been on Ibrutinib for 4 years. I live a totally normal life apart from COVID restrictions.
Thank you so much yes I thought I would live without needing treatment but now it’s not to be She did ask me if I wanted to take part in trials of new drugs but as she upset me so much I just refused I am not sure what to think to be honest I am very confused and depressed just need a bit of encouragement to be able to deal with this so I will definitely take your advise and see my GP
Trials are the way ahead in my opinion, you need to discuss this with your consultant.
If you find your consultant insensitive is it possible to see someone else? If not you may end up with a new one when you enter the trial. I did and I am very happy with him.
I totally get why it is shocking, as it just adds a lot of unknowns when things have been going well for you for so long! Is your doctor a good CLL focused specialist?
She has replaced a lovely dr that I was seeing for a long time who had left She is one of the Haematologist in the clinic so I am not sure how much she knows
There a number of UK members on the forum who can steer you in the right direction. And, if you do in fact need to start treatment - yes, the big change is scary. (It scares me ). But most people do really well on it, and if not - there are other options.
I also live in the south of England and you definitely need to be with a CLL specialist. I am under the Royal Marsden in Chelsea and they are a fantastic team led by Dr Iyenger. You need to request a referral by your GP. I am currently on treatment and feel I am getting the best care you could ask for on the NHS. Good luck to you.
I’m very sorry that your doctor appears to have no empathy for your situation. What a shock for you after so long and a very understandable reaction . Doctors would do well to focus on the psychological side of their work as well as the rest of it. Take care of yourself. Your feelings are very ‘ normal’ .
My advice is simple: if you are progressing to treatment after 17 years of W&W, then I would presume you probably have mutated disease. Some who are mutated never go on to treatment. In fact, I believe the number is close to 60%. If you are in the NHS, you can find things can be rushed, MDT makes decisions without any discussions. If you need to move to treatment, you need to be comfortable that the treatment is right for you. I suggest getting a second opinion from a CLL specialist and asking your consultant to refer you. If you can afford the cost, go for a consultation privately.
Good morning, I’m SO sorry but your doctor sounds like an insensitive clown. I to am on W&W and have had some brutal skin rashes which were brought on by steroid use from my past with eczema and psoriasis. In my case this rash did not indicate that my CLL was progressing. I would see a CLL specialist and my labs redone before even considering treatment. X🙏
I initially received some chemo combined with Obinutuzumam. Before starting the injection I was given a number of drugs to control symptoms including Steroids. I did not notice when the nurse started the IV, but suddenly was feeling choked, my face turned red, I asked them to stop. I went away and came back 4 months later. The nurse who has been at that hospital for 25 years said the reason I had the reaction was that the technician had not waited the full 20 minutes for the steroids to take effect. So on this second attempt, all went well; I had no pain, not even fatigue, and that continued for the time I was getting injections . The oncologist who was new to CLL, tried to tell me I had had a panic reaction. It was not so The steroids are part of what prepares you for the treatment, and makes it easy. I watched TV and chatted feeling fine during IV injections.
No. The steroids are standard, along with other pills, to avoid any symptoms from the initial treatment I got. I never had skin rash or any symptoms, except maybe fatigue. I had no watch and wait period. At age 72 I was simply told I had stage 4 CLL. I was still working at the time. Steroids are anti-inflammatory and are used to treat a wide range of conditions. For me, the steroids were simply given a half hour pre meds infusion. I was not taking steroids at any other time.
IDK if this will help you, but when I was having skin issues I stopped using proprietary skin lotion products. There's always other chemicals of some sort in them. I switched to (always look for organic and expeller pressed when possible) coconut oil/butter, NILOTICA shea oil/butter, kukui nut oil. If my heels were cracking I occasionally use Bag Balm or plain white petrolatum, although I dislike using petrochemical sourced stuff. Even food grade organic expeller pressed safflower/sunflower oil will help, if the others are hard to get/super expensive with all the supply chain issues.
I would slightly dampen my skin before reapplying, in addition to using it just out of the shower (barely pat dry skin, not rubbed hard) several times a day. It seems like initially I was applying it every hour or so. After a few months my skin problems died down a bit, now I sometimes reapply during the day but not always.
I did have to use prescription steroid triamcinolone the first week, mine was so swollen & painful. And that's also when I really really cleaned up my diet, avoiding sugars except for monthly chocolate treat. I avoid chemicals, preservatives, "natural" or artificial flavors. I was sick earlier this week, I had a cup of tea that I didn't realize had "natural peach flavor" until I checked the ingredients the next day after being sick all night. Who puts chemicals in TEA?!? smh.
Have you had Vitamin D levels tested lately? There's been some instances of people needing higher doses/levels than "average" to clear up certain skin conditions. I try to keep my levels of 25-hydroxy D (make sure they don't order 1,25-dihydroxy by mistake) around 60-65 ng/ml even though low "normal" is around 30. I personally need prescription Vit D3 25,000 IU once a week, 3 weeks a month, to maintain this blood level. There's discussion in the literature from some oncologists who prefer to keep their patients around 80 ng/ml, with a level over 100 ng/ml being considered toxic. But there's no good studies verifying what level might be optimum that I have seen recently. And one study I read that referred to a psoriasis which was cleared up in a patient on 25,000 IU A DAY! didn't say how long that dose was used, or if it was decreased after the psoriasis cleared up.
They are probably testing other organ systems because while CLL infiltration into other organs is very very rare, it has occurred. So they are doing all this testing not because they think you have CLL in other organs, but to make sure nothing else is possibly affected. Hopefully looking at it this way will be more comforting instead of frightening. Like a yearly PAP/pelvic is done just to make sure nothing is going on, and if something starts it's caught very early, not because the docs think you have issues that need treatment. It's a preventative measure.
Hello.I’m sorry you had that experience… I can completely understand it was a shock for you and it’s scary… the doctor should have understood that too.
You know that on here there are lots of knowledgeable and supportive people who will help you through this.
I am sending you a big hug. You are stronger than you think!
You’re so welcome 😉 I’ve learned far more here, about my husband’s CLL and treatment, along with which questions to ask, than at the hospital. I think, if you gather information here first, you feel more confident in asking pertinent questions at the hospital appointments.
This was caused from steroids, not CLL. It lasted 4 mths. We’re all different, but in my case after my CLL dr ran labs it was discovered, this was not progression and did not require treatment. Because rashes are somewhat common with CLL, some doctors automatically assume it is disease progression.
Wow, that sounds so inappropriate. We encountered such a doc at Sloan Kettering over husband's (non CLL) cancer. It adds to the shock, doesn't it, adding anger to the sadness. Some people just shouldn't be doctors. Is she your only choice, or are there others you might switch to? But the good news is that, from various posts on here, as so many people have been getting or having gotten treatment, I wouldn't view it as necessarily totally dire but more a nuisance to get you back to your watch and wait. Hang in there. May I ask, what was the skin condition that was deemed "from CLL"?
The skin problems started when we first went into lockdown so it was impossible to see the GP face to face after so many telephone appointments he decided to see me and than he referred me to dermatologist who carried out a biopsy of the skin than they had to send it to Kings to get it diagnosed as they couldn’t The specialist had than confirmed it was CLL related and send me to see the haematologist who than said your red blood count is low and as a result you have anemia and I will be put on medication
Than when I reacted she was so rude and said I had a good 17 years run so why would I be shocked
So that’s the gist of it all it all started me getting a rash on my back and just became more and more problematic after been given so many different creams some of which were steroids it didn’t go away
So just have to wait maybe some other Doctor will tell me it was all mistake 😢thank you all so much for showing such interest and replying to my post
I too am in WW. It was a big shocker when I learned I had cancer. Like a life punch from left field. I found myself in circumstances so unfamiliar I did not know myself. I find your reaction very normal. I too do not want to burden my family as they worry but I also know they are involved and out of love I try to share a bit with them
As said here , I went to a specialist when I was told to begin TX and the specialist said continue WW.
I work on accepting my condition and having whatever feelings pop up as I travel this journey. Let it be is my helpful mantra
My story is similar. I developed painful bumps on my face and neck. The dermatologist explained that once I arrived at the point of getting treatment for my CLL, the lesions would resolve themselves. I am currently on Acalabrutinib and that is exactly what has occurred. My skin issues are almost totally gone.
So sorry about the outcome of your skin tests and the doctor's uncaring comments. I sympathize with you.........I've been there. And there are 2 doctors I will never go back to for treatment.
It sounds like your doctor picked the wrong profession. I would seriously consider a second opinion. This is a chronic disease for most at this point and it’s a long haul. I’ve loved all my docs and have had great relationships with all of them. We are all in this together and you have every right to feel blind sided. Find another doctor. Good Luck and we are here for you. Love. Tony
The very first time I heard of CLL, my GP told me to put my affairs in order. I just laughed. I knew nothing about CLL, but did know that I was not going to pass any time soon. That was 5 years ago. The initial treatment was pain free, and in a couple of weeks, I was in remission. I have been living fairly normal life since, but more delicate, hence, more carefull with my health The drugs available now for large numbers are advanced beyond ten years ago, and I would feel unafraid, and hopeful, as some people are now reporting cures. GPs these days, with the demoralization of COVID conditions should not be expected to give much sympathy. You will be passed on to an oncologist or oncologist/hematologist who might be a more satisfying consultant. In other words do not feel too worried. Your initial reaction, however, is totally reasonable. Best of luck; you have lots of good folks here to ease the way.
I am so sorry you have a doc like this. IMO they are from a time when getting into med school was based strictly on grades, without assessing for empathy/kindness.
I hope you can find a CLL specialist that it's not overly difficult to see, with this person perhaps only doing routine bloodwork. I wouldn't want to continue dealing with a person like this! I think reporting her callous remarks to some higher ups in the system may help with getting reassigned to another CLL provider. This one sounds awful. No one in their right mind says something like that to a patient! I can see someone saying succinctly/abruptly "your condition is progressing" but the comments afterward "why are you so shocked blah blah" are cruel and unnecessary. Use that as a basis to get reassigned, she was totally 100% out of line to say things like that. Yes, everyone is stressed, but if/when we get thoughtless/careless in treating patients, we need to step back a bit.
You obviously need to find a new CLL Doctor, if that is possible. The medical part of our CLL is very important however we need a Doctor that can treat us with dignity and compassion. Maybe she had a tough day, maybe she had some family issues. Not your problem. Inquire about another Dr that will relate to you in a more professional manner. You will have a better relationship and you will have faith in what they prescribe.
Three months after my husband passed away from a fungal infection in his lungs from CMML that changed into AML I went to my annual Physical. My WBC was over 14,000 and I got light headed and gasped when my GP showed the report to me. She looked at me and said, "It's not catching you know. She didn't point out any other numbers. I still can't get that out of my head that anyone could be so callace and thoughtless. The upside is it motivated me to push in learning everything I can with a good medical team I trust. Health Unlocked with all the knowledgeable folks gives me strength and courage. Best of luck with finding a specialist you trust.
I'm sorry to hear about your experience. On my first appointment with my oncologist back in 2013 he said that around 10% of people with CLL never need treatment. And so we all hope that we are in the 10%! Now on my last two visits he has also started talking about treatment! Even with this ongoing relationship it was still a bit of a shock. It must have been much worse for you. I have read on this forum, the CLL Society and Lymphoma Australia that it is really important to follow the 'test before treatment' approach. There are many new treatment options becoming available but it is important to know certain things about your CLL first to choose a good treatment approach. As others have suggested a specialist who understands CLL would be best but if you don't have that option the following web site will give you access to a one page document that may help you ask some important questions: cllsociety.org/cll-101/test... Best wishes.
Of course you would be shocked and surprised, but the delivery of bad news is certainly an "art". To be kind but informative, to be reassuring and hopeful should be how your doctor spoke to you. We are here for you, so feel free to ask and share your questions and feelings
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