You are here

Forum (and CML) newbie

Hey there - I am new to this forum and thought I’d introduce myself. I am 47 and I was diagnosed with CML in April. I live in the US, but this forum seemed more my style than others I have seen, so thanks for including me.

I had no idea anything was wrong with me. I wasn’t sick at all. Looking back, I realize I was more tired than I should have been, but I wrote it off since I am a working Mom and aren’t we always tired? At my annual checkup, I had a routine blood test that showed an elevated level of white blood cells, and that got me a referral to a hematologist and here I am.

I had my bone marrow biopsy and then started on Gleevec. After just a month, my doc said I am having a “fantastic” reaction to the medicine, so I am glad about that. I am having some side effects from the medicine, but it’s nothing I can’t handle at this point.

I have a great support system with my husband and son, extended family and friends, but I figure a little more support wouldn’t hurt. From what I have seen on this forum already, there are a bunch of people living with CML who are quick to share their successes and offer some encouraging words, and I think that’s awesome.  

I will warn you though - I will probably never get the time difference straight smiley

Lisa 

Hello, and welcome. 

I’m not sure what you mean about the time difference ... though we are based here in the UK, our membership is worldwide! So people will post and reply at all times really. You can change your time zone in your user profile if you want to see posts shows in your local time.

Super that you have a good support network, that really helps. And having a excellent response to the medication is a great start. What sort of side effects are you having? Chances are someone here will have experience with them, and often some side effects stick around for only a few months until your body “gets used” to the medication.

David.

Hi Lisa,

April is very recent I was diagnosed end of March I am 38 years old married with 2 small children. It is a scary time for sure but as you say your meds are working and your doctor is happy.

Its great to have the support of friends and family I too am very lucky in that department.

I love this forum I have learned a lot about CML and best of all it removes the emotional loneliness that comes with battling a disease like this. (Still can’t really believe it happened).

Symptons wise depending on meds they come and go. They’re certainly a bit harsher in the beginning but mine have eased off. I have noticed joint pain (I am on Nilotinib) and had a rash on face for the 1st couple of weeks which went and a really sensitive sore scalp that also went. Am hoping the joint pain goes too mainly it’s in my left top shoulder/neck area for some reason, or maybe it’s coincidence. You tend to be hypersensitive and put everything down to CML.

Wishing you all the best with your treatment reach out anytime!

Alex

As far as side effects, I am having leg cramps, mostly at night. And sometimes my body just aches, kind of like my body frame hurts. Those are really the only two sticking with me. Mostly, I am just tired all the time. It’s enough for me to whine about, but fortunately, not really affecting my daily life too much.

I am still trying to get my head wrapped around all of this though. I am a positive, upbeat person, so I am trying to focus on the positives, especially the fact that this cancer is treatable. I am calmer now, and mostly having good days, but some days... 

 

Yes the musclar skeletal aches are common as is joint pain. Small price to pay as you know for treatment of this horrible thing.

I’ve just got back from the pharmacy (UK hospital) to collect my 3rd cycle of tablets and yet again they weren’t there! Last time I went I missed 2 days, apparently the nurses and consultant said it wouldn’t make a difference and that there is a lot of scare mongering online. Psychologicaly I don’t like missing a dose at all and as I understand it compliance is one of the biggest reasons people don’t hit major milestones I.e cyctogenic and mmr so not sure why people tend to be so relaxed. After all it’s not there life at stake I guess... Luckily I have enough to last me to tomorrow eve and should have received the batch by then. I’ll try not worry.....

Hi Lisa

Welcome to this supportive and very informative website. I was dx nearly 9 years ago and have been on imatinib since then. The early weeks weren't brilliant - very puffy eyes, nausea, cramps and dry eyes. Now I can honestly say my life goes on as usual and, apart from some stiffness which taking up Yoga has helped and dry eyes for which there are over the counter remedies ,I have very few side effects. I have found it is important to drink lots of water and exercise helps with any muscle pains. As my haematologist said on dx, if we have to have cancer, this is the one to have. It's the one they know the most about and the one they are the nearest to finding a cure. More and more people are able to stop their medication as they have achieved very, very low levels of the disease and this is a very positive sign. (Of course this step is never taken without the agreement of the haematologists and only when your levels have been consistently very low for a long time).

It is good you have a support network and it sounds as if you have a positive attitude - both very useful.

Please feel free to ask any questions - no doubt someone on here can answer,

Take care

Make sure you take the meds. every day

Best

Chrissie ( Devon, UK) xx

welcome Lisa !

You might want to check out magnesium to help with the cramps and bone pain.

My husband hurt his shoulder and aggravated an old shoulder pain several months ago. He had to have repeated chiropractor visits and it really did take a long time for the shoulder to heal and pain to subside. I wondered at the time if his TKI contributed to this.

Fatigue is a v common side effect. Hard to get peace and quiet and rest if you have kids but my husband learnt that is what we had to do and then ge would feel better next day. you just cant fight it. He has had far fewer fatigue days since reducing his dose. you will also feel much better as your red blood cells get closer to normal range.
best louise

Nice to know you. I am also new. I will be starting Gleevec at the end of the week. I also live in the US, am 64 years old and am working as an adjunct professor of English at a local community college. My doc has suggested I take a medical leave until I know how the drug affects me. I also was blindsided when my regular doc sent me to a hematologist. Wow. What a blow. What advice can you give me about taking this drug? I am pretty scared.