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What reason would there be to be withdrawn from treatment due to being unwell and a rash?

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Hi! I’ve recently joined this group, Thank you.

Im a 35 year old female and was diagnosed on the 5th July 2018 with CML. Due to my phobia of tablets, my treatment of TKI was delayed by 3 weeks. After several sessions of hypnotherapy and the support of my family and friends, I’ve come along way in taking tablets. I was initially told that I would be taking Nilotinib, however because my consultant was not comfortable with me ‘attempting’ to take this drug, I was prescribed Imatinib, which I knew I could swallow with food. I was taking this for 2 weeks before being pulled off of it on Wednesday. From day one, I had a headache fine, the same with feeling lethargic and bone pain, fine, they said I would get side effects. However, I gradually continued to feel worse. Severe nausea, vomiting, shivering, a high temperature and having no energy to even get out of bed to look after my 2 year old son. After 7 days of feeling so horrendous I got a rash all over my body. Before I got my rash, I had phoned my Nurse/consultant to ask if this was all normal and was told to seek advice from my GP to make sure I didn’t have any other underlying infection, as I “should be well enough to go to work”. I did see my GP. I was given antibiotics for a suspected infection, which I took. Even after they finished, I still continued to feel the same (I was seen by the hospital GP following a referral from 111 over the weekend and went back to the GP after the weekend) I then broke out in the rash. I phoned my nurse/consultant again who said not to take the Imatinib anymore and wait to see my consultant in 2 weeks. No one looked at my rash and I was disappointed that no one wanted to see it, as it could have been related to an allergy, side effect of the antibiotics, a virus or something else? So my question is (sorry for the long post to get to this) what does a rash connected to taking Imatinib mean in order to stop taking the drug? Does it mean the drug has done something to my body? I feel like I’m in limbo and won’t be speaking to my consultant for 2 weeks. Thank you in advance

Hi Gillian,I am Denise had CML since December 2017 so I am no expert and still coming to terms with all this.I am so sorry you feel like this and I think you are being treated or should say not being  treated, appallingly by your consultant.If this was me I would be changing Hospital and consultant pretty darned quick you can’t just stop your meds without a replacement  and wait to be seen in a few weeks that’s just not good enough.Having headaches could be due to not drinking enough water ,drink as much as you can it helps.You can ask for a tablet to combat nausea ,it’s only tiny so you won’t have a problem taking it,it should wear off eventually hopefully.I developed a rash on my upper body was a bit itchy at first but with lots of vitamin e cream I could control it now it’s ok ,it was worse in the very hot weather but it’s fine now, I was certainly never told to stop my Imatinib because of any of these side effects.The nurse who said you should be ready to go back to work is talking rubbish ,fatigue is the worst bit for me I actually gave up my job because I am just too tired  but I am 61 ,and you have a small child to look after.Both my Daughters in law are absolutely knackered looking after their two year olds and they are healthy so don’t beat yourself up about that.Someone on here will reply soon hopefully with more expert advice, but please don’t wait around weeks to be seen without taking any meds that’s just wrong .Hope you get sorted soon and feel better .Regards ,Denise.

Hi I am also newly diagnosed. I am 64. I have been on Sprycel for 3 weeks and mainly feel horrible in the mornings. Weak and tired. My oncologist said  continue working it will be good for you. LOL. I was told rash  was one of the main side effects of the TKIs.  I  feel for you having a young child to care for.  I know I am a lot older but the fatigue is real. I was working full time up until diagnosed. I hope some others that have been around for awhile will get back to you. If it was me I would try to find another doctor or insist on an appointment before 2 weeks. Dawn

Gilli,

I just had an allergic reaction from antibiotics last Tuesday and after a week in the hospital they let me go because the ALT liver count was too high to put back on the tki.    The AST liver enzyme normalized.   I am off till the ALT gets down more.  My doctor wants the liver numbers back where they were before the allergic  reaction and the rash from hell.   I was called, "The Skittle Girl" by my nurses.   I have yet to restart the tki.   Hopefully Wednesday.   Reason being they didn't want interference to affect the liver right now.

I do not know your situation, but to hopefully quote another member of this forum closely-- after learning his doctor was over his head treating him, "don't take  it personal but I am finding a doctor who has treated thousands of CML  patients."

It sounds like you might be with a doctor over their head.   This is your life and it has changed forever.    You will educate yourself.   Study.   See what you can do from a nutrition stand point.  Make sure you sites you study are good sites, cancer society,  MD Anderson,  Mayo.....

 

 

 

 

 

 

 

 

I had the same thing you have. The “Anxious Fatigue”, and
Blotchy Rash, dominate my life for a few months.
My cancer nurse was shocked when she saw me in a
pair of shorts. It was Summer folks.

I was miserable, itchy and sleepy.
Imagine being, sleepy and scratching at the same time.

A few months later it got better, my numbers got better,
the rash abated, and my Leukemia numbers went down.

Two years later, no rash, still a little sleepy, small indigestion,
some eye dryness, itchy scalp, and non-detachable for CML.

Give it some time.

Romo

Thank you for taking the time to reply Denise, I hope to be able to help someone else one day too. I had been taking anti sickness tablets too but they didn’t seem to have much effect. After eating my main meal and taking the Imatinib on a full stomach (not just a snack) I was still vomiting about an hour and a half after taking it, as well as feeling nauseous all day. 

Good luck with your treatment.

Hi Dawn

thank you for taking the time to reply. I’m sorry to hear of your recent diagnosis too.

It really is awful and hard for people to understand I think sometimes. I hope your side effects settle down soon.

Thank you Onekayaker

Thank you for taking the time to reply.

Gosh, sounds like you’ve had a terrible time of it too! What I feel the issue is with my treatment, is that the clinical nurse assistant, assistant is the one calling me and not affording me the time to answer my questions, or doesnt have the answers herself. My consultant hasn’t advised of how the Imatinib was doing or what her next line of treatment is, just come off the drugs and we will see you in 2 weeks.

Good Luck with your treatment 

Hi Romo

 

thank you for taking the time to reply.

Wow, so you really had to go through the mill for the side effects to subside!

whst I don’t understand is that I was given a list of side effects that I might get but to carry on as normal. When I go those side effects just to stop??? And without seeing me face to face. My rash didn’t feel itchy but it had only been a day. I had itchy skin as one of the symptoms for cml to take me to the doctors in the first place and still continue to itch.

good luck with your treatment 

Gillian, you and Gleevec have just gotten off to a rotten start, that's all that's wrong with you, but that's a lot!  I think for some of us Gleevec is just too much to tolerate.  My first onc told me "most people tolerate the drug very well," which was meant to be encouraging but only served to make me feel like an outlier.  For two years I was unbelievably miserable and sick, 24-7, and became almost suicidally depressed as well.  My onc just didn't have very many CML patients (as they used to all die) and the only drug available back then was Gleevec and, I think, one other.  I'll cut to the chase here - I eventually found a very nice home with Sprycel and have done very well (now at 0.005% IS and holding steady).  It enrages me that newly diagnosed patients get the kind of run-around and substandard care that you have.  It's why I wish new patients could have weekly face-to-face visits for the first 3 months.  It doesn't have to be with the doctor each time, but certainly a new patient needs to talk to someone KNOWLEDGEABLE about CML and TKI's. My life turned around when I found a CML specialist.  I am so very sorry for your misery.  Things will get better for you.  Get yourself as educated as possible about CML and TKI's.  Find a CML specialist.  EITHER:  try to ride out the initial Gleevec physical misery until you see how your CML is responding, OR: ask to switch to another TKI now and see if your side effect profile improves.  Remember, all the TKI's work very, very well - it is other circumstances that determine which one will be right for YOU.

Kat is exactly right.   Said what I was fumbling to say in earlier post.   I am Very lucky to be in Houston with a doctor at MD Anderson Center.   Weekly blood draws and a face to face in the afternoon.   I was moved into a room the next day.   I did have my own room in the EC  till then.   Thursday morning the head of the leukemia dept was making rounds with my doctor.   Dr. Kantarjian made the morning rounds again the next day and talked to me.  To put it in a great brit term, I was gobsmacked!   

 

 

 

 

 

 

Gillian, can you let us know where your are seeing your consultant, and any other test results. It sounds to me like you need to be seen at a centre of excellence for CML, and that may not be case just now. There are many haematology specialists who only see a few CML patients a year, and that is not what you need. I am lucky that I have reacted well to imatinib, and am now on a reducing dose. I will hopefully be the first patient of my consultant to attempt Treatment Free Remission (TFR) in a couple of months, but this has been done in close consultation with a regional centre of excellence.

Thank you for replying to me. After reading some of the responses, I feel that maybe I haven't allowed Imatinib to be given a chance? After being advised that I will get 'some' side effects, I just feel I have been left a bit confused with my treatment 'plan' and steps going forward. I am seeing my Consultant again this Thursday and have a list of questions! I think what makes it difficult and what my consultant has never come across before, is my tablet phobia. My consultant hasn't given me the impression that she hasn't dealt with many CML cases before, more that my Phobia is causing a spanner in the works. I had to dissolve it in water the very first day i took it and OH BOY, that taste! I've never tasted anything like it!!! I'' be honest, I have been hoping there would be an alternative, such as injection...I'm fine with needles! ;-) 

 

Hi Gillian, just a quick thought on the question of dissolving imatinib tablets. There has been some discussion on here in the past about dissolving imatinib in apple juice - might be worth a try? However, I think that those comments may be from before the generics were around; the only difference I have noticed between the Novartis Glivec and the generic I now take is that the coating on the Wockhardt generic has a quite unpleasant taste.