You are here

Am I normal!!!

My first post, so here goes...

I was diagnosed last August and since September been on Glivec 400mg. I cant quote my blood results verbatim, but for approx the last 5 months my bloods show as normal, so I assume that’s good.

My last bone marrow test, was not successful, as far as I could understand,
there were not enough cells dividing for a result to be possible. I could well be wrong on my interpretation, but does that sound familiar to anyone, and if so could you explain??

Part of my problem regarding not seeming to understand, is that when I attend
the hospital I seem to nearly always see the consultants registrar, who when
I seem to ask anything, he has to pop out and get advise and comes back and either changes the subject or starts drawing pictures that don’t make much sense to me.

I always mention about being overly tired, but this almost seems to be ignored. When I first went to the hospital back in August and Glivic was mentioned, I was told that I would be back to normal in no time...Well im not!! Thanks to finding this forum I now see this is quite common, which is help in itself, but is there anything I can do to improve this?

I suffered for the first 2 months or so with bone pain, but now that’s fine, but the tiredness continues and its becoming rather annoying, I continue to work, but that’s about all I’m up to most of the time. So any top tips would be most welcome.

Thanks for your time in reading this, and even more thanks, if you can shed any light,or make suggestions ref any of this.

Thanks again,

For the record im 40 years old, and till about a year and a half ago was always active and would be crawling up the walls if i had to stay in...How times have changed!!!

Michael

Dear Micheal,

I decided to reply to you as so much of what you are saying struck a chord with our experience of the "early days". My fiance was dx last year so it's him that's going through it, not me.

First off I want to assure you that you are perfectly normal and there are other people who will be nodding their heads, thinking "I remember what that feels like".

After the diagnosis we spent months trying to get our heads round what it all meant and understanding the medical jargon. For a long time I felt like I was being stupid not understanding. The first consultant we had tended to brush off our questions. We now have a new consultant who is so much better about explaining things and repeating it if necessary. My advice to you would be, if there are things that you don't understand keep asking. You are not being stupid or pushy - it's your right to have your questions answered.

It's good news that your bloods are back to normal, and hopefully your next few bone marrows will also show an improvement. If you read through other posts on this site you will see that individual bone marrow results are not as important as the general trend that they show, so there's no need to worry if one test didn't work out. (I've never heard of BM results not coming out but perhaps someone else can help you out with that.)

As for the tiredness thing, some people aren't affected much by it and go charging off around the world, and other people find that it significantly affects their lifestyle. My fiance finds that his energy levels vary, but it's generally got better over time. Either way, your consultant or registrar should be listening to you, and discussing it with you, not dismissing your concerns. You've suggested that the issue might be that you don't speak directly to the consultant. Perhaps before your next appointment you can call your hospital, explain your concerns and ask to be seen specifically by the consultant. Sometimes it's not always easy to do this for yourself in which case perhaps a family member can ask (I've been able to get answers by playing the anxious partner card).

I know of other people who have opted for various forms of holistic therapy such as accupuncture to help with some of the side effects such as tiredness, muscle cramps, nausea etc.

I'm sorry that you have to be part of this forum at all, but there are some lovely people on here who are happy to share experiences and answer questions. And if you'd like to meet other people with CML there is bound to be someone who lives near you.

All the best with the next bone marrow, and I hope you manage to get some useful answers.

Bhiru

Dear Michael,

Welcome to the group! Your first post gives an excellent summary!

As Bhiru says every symptom you state adds to the summary that your symptoms are very normal! Blood values returning to normal, bone pain and tiredness are all very common occurrences.

However, being normal does not mean that we are all standard, to be treated as if on a factory conveyer belt. We are all unique and entitled to be listened to and treated with the appropriate care. As Bhiru suggests you should take steps to ensure that you receive the appropriate attention next time and get an opportunity to discuss your concerns and symptoms and options.

Your blood values returning to normal values is good, but additional tests to obtain the percentage of leukaemia cells is also very important. The one marrow test is one such test. I have not experienced the issue you mention, but I believe others have. There are alternatives though which your specialist should be helping you with. I am not an expert, but I believe for some people, stopping the glivec a few days before the BM test can allow sufficient cells to be obtained for a proper reading. But this MUST be done in consultation with the specialist! Alternatively FISH or PCR tests can be used to establish performance and trend.

Unfortunately I share the symptom of tiredness and I am afraid to say that it still exists after nearly 2 years, although I seem to have got more used to it now. Some people find they react differently depending on whether they take glivec in the morning or evening, so trying switching from whichever you currently do to the other may be worth consideration.

Please note that you are definitely not alone in terms of side effects and you will find a sympathetic response from here.

Best wishes,

Bill

Hi Michael,

I don't know if you are normal!

However I guess you are beginning to realise that your symptoms are entirely normal. When I was on glivec the tiredness was a definite issue, for some this does seem to improve with time. However, I only managed about 6 months on glivec before I needed a break, but mine is a complicated story.

One thing about the tiredness is that it can just hit you completely out of the blue. You can literally be fine one minute and fairly desperate the next. This is almost the hardest thing to deal with and also hard for those around you to understand. There is no magic answer to dealing with the tiredness and in some ways if that is your worse or only side effect then you could be considered to be lucky.

The one essential thing that I think you do need is a good relationship with your team, it is very disconcerting when you see a different face each time and more so if that 'face' keeps popping out to ask questions. I think that you have to ask if you can see the consultant, difficult to do sometimes but you can ask the nurses in the clinic or you can email the consultant or his secretary - look up your hospital on the internet and you should be able to find all the departments and all the consultants and if the email is there use it! I have. Alternatively phone his secretary and explain, you won't be the first person to do this. You will be dealing with this team for a very long time and it needs to be a good both way relationship.

You might also try to find out if they treat a lot of CML patients in your area and if not you may consider asking for your care to be shared with a hospital with expertise in CML. Again this is all within your rights without being classed as a 'difficult patient'.

Do ask if you have more concerns, issues etc. There is always someone in the same boat.

regards
Susan
www.caringbridge.org/visit/susanleigh

Susan

Hi Michael and welcome to this forum.
Good news that your counts are 'normal' but it is unfortunate that you are not getting the answers to your questions. It is an important point that you need to have a good relationship with your doctor and if you are treated at a general haematology clinic then you may not feel confident that the doctors you see are expert in CML or therapy with Glivec/other TKI's.
Your might ask for a 'transfer' of care to a centre of excellence for CML, I am not sure where you live but it may be worth travelling to get some peace of mind and answers that mean something to you.
Let me know in which region you are living and I may be able to suggest a CML expert that you could transfer to.

Your BMB might not have given enough cells for testing because sometimes the region that they target on the illiac crest (your pelvic area) can be depleted. Or it might be that whoever took the sample just did not do it well enough... it is a difficult test to perform as it can cause a lot of discomfort for the patient.
As time goes on your marrow will recover and the population of marrow cells will recover. However, it is common that cells are taken from peripheral blood samples for FISH testing... when the amount of ph+ cells get low enough then you can be tested by a much more sensitive test called PCR.

Regarding your tiredness... if you look at your blood count (you can request a copy of this from the clinic) and note your haemaglobin level then you might see that it is quite low. Glivec does surpress the HGB levels and mine never really got above 10 when I was taking Glivec. This is quite common which is why tiredness is an issue.
You also might find that taking Glivec before bed...after dinner... helps with this. At least you can sleep of the worst of the effects during the night. Otherwise you need to pace yourself and accept that you will be more tired. A lot of people find that walking regularly helps with this side effect. Starting off slowly and building up. Swimming can also help with the added bonus that it is also relaxing.

Keep us updated on your progress and if you have any technical questions then please ask.
If you go to the FAQ/Glossary section you will find information of FISH/cytogenetics/PCR and a copy of 'normal' blood values.

Best wishes,

Sandy

What an excellent response, thanks to you all.

I have moved the time I take my medication to during my evening meal, I did that sometime ago, to try and offset the worst of the symptoms to when I would be asleep.

Used to take it after my meal, but after recently regurgitating one, I now take it half way through my meal, if you have never tasted one half digested, they how can I say...It does not suit my taste buds!!!

I live in the Midlands and am being treated at what I assume is a general haematology clinic, at The University Hospital Coventry. The staff are all very pleasant, you could not ask for more, but as people put it, my patient/doctor relationship could be better.
Only in the fact that im not convinced with some of the answers im given. Sandy's knowledge above ref my bone marrow test results, makes perfect sense, yet the reg who
dealt with me, just said it was nothing to hopefully worry about. On that note, I have
a couple of blood collection bags (if that’s what you call them), ready for my next visit. One is the normal general bag, which goes up the air pipe for your instant results. The other is going off to the Cytogenetics lab in Birmingham. Its noted in the reason box as BCR ABL CML PH+VE, would this be due to my failed bone marrow test?

Thanks again Michael.

Ps, wont have access to a pc for a week, or so to reply, but please do. I can get someone to print of any responses and let me know.

This is my first visit to the forum as I'm having difficulty adjusting to life as it is now, as opposed to how it was for me..Like you, I have always been very active, raising two kids on my own whilst also having all the usual house and garden maintenance. My kids have now started their own life-paths and I live alone. I was diagnosed last May when I was admitted to hospital fairly seriously ill. I am very lucky with my local hospital in that they at least listen to me and I get to see the same people (Eastbourne DGH)..
However, the side effects of the drug Glivec have caused me to become extremely immobile, although the general bone pain did wear off after about four months, it has now settled into excrutiating pain and immobility of my left hip. I am told that my blood levels are good and yet experience the same mental, physical and emotional fatigue that you touch on. I am told that the drug has not had any effect on the cancerous cells and have declined an offer to double the dose. I suffer constant diarrhoea and beyond working 27hours a week, I achieve virtually nothing more than feeding myself. I would so love to ride a motorbike again, which I was still doing nine months ago.
I am so pleased to see the support that people are giving you on a more technical level and I'm now off to check out the Feverfew site as this looks really, really interesting. I note that the Americans are also looking into the Coleus plant! I have always imagined that for every disease on earth, there will be a tree or a plant, or flower to combat this...so here goes!!
Take care and do take the advice from others when they say that it is your right to have the answers to your questions.

Best wishes

Vickie

Hi Michael, I am glad you found the responses helpful. On the subject of your blood sample instructions.... well yes, I think your guess is correct. The blood sample will be sent to the more specialist lab for cytogenetics testing.... but they probably would have sent the bmb sample (if they had managed to get one) to be tested there as well. The reason stated on the colletion bag just means that you are indeed BCR/ABL positive which in turn means that you have philidelphia chromosome positive cells evident in your blood and therefore have ph+CML. As it is 9 months since you were diagnosed, they now need to know how many ph+cells are still present so they can assess your response to Glivec at 400mg.
How often have you had bmb's... is this the only one you have had since diagnosis?

Maybe as you are so near to Birmingham it would be an idea to ask for a transfer to the specialist CML clinic at Queen Elizabeths Hospital. The consultant there is Professor Charles Craddock who is extremely well known as a CML specialist and is someone I would highly recommend. I was treated by him when I was first diagnosed back in 1998 as he was then working at Hammermsmith Hospital in London. He would have no problem with answering your questions. He is very supportive of the idea of educating patients and including them in clinical decisions about their own treatment pathway. There is an excellent specialist CML team at QE.

best wishes,
Sandy

Hi Vickie,
I am sorry that you are suffering from such horrible side effects, but I must say that it is worrying that you have been told that you are not responding to the dose of Glivec that you are on. It is very important that you ask for the results of the tests which show your response so that you can assess it for yourself and make a decision about your therapy and where you go from here. Without test results as CML patients,we are all in the dark. The only way we can assess how we are responding to any given therapy is to understand what is going on in our marrow. Whether that is by FISH, cytogenetic or Pcr tests.
If you you have refused an increase in your dose because of side effects you need to think seriously of the alternatives open to you and therefore need to talk to your doctor.
My guess is that Eastbourne does not have a specialist CML clinic and would therefore urge you to ask for further consultation with a CML specialist, either at Hammersmith Hospital or Kings in London.
You really should try to get to the bottom of the problem if you have not had a good enough response to the drug. It may be that you need your blood levels of the drug testing to see if they are at optimal or suboptimal levels. If they are at the optimal level and you still are not responding as well as expected then you may need to consider changing to another drug.

I know side effects can be intolerable for some people, but you cannot ignore the fact that your doctor has recommended an increase in dose. My advice is to seek an expert opinion on your case.
Best wishes,
Sandy

Hi Sandy,
Thanks for bothering as much as you have with your response to me!
You are absolutely right that Eastbourne DGH does not have a CML unit, but when I see them, they do a blood test which the Doctor has the result of by the time I see him, i.e. within the hour and I am said to be in haematological remission. It is the other test, I think it might be FISH, but certainly of a cytogenetic nature, which goes off to Kings for analysis. Although I don't bring a copy home, they do show me the graph, where I should be on the graph and where I actually am. I am still running at about 96%. Annoyingly, Kings have now altered the way they record the test and it's now coming through in a different format. I have asked for Eastbourne to translate the result and continue plotting it on the graph, so we'll see if they manage that when I return to them next month.
Accessing Kings is not easy for me as I am an hour's bus ride from the nearest station and Kings run their clinic at 9.00 a.m. therefore incurring the hefty full fare on the train. I would also need two days off to do this as I would be thoroughly incapable of working the day after! I know,... I should take your advice and change to another drug, but hey, I bet the side effects will be just as challenging!! I have a bread-bin full of drugs and most of them are to combat the side effects of the Glivec.
Thanks Sandy, you take care too!

Vickie

vickie

I attend King's and travel up from Haywards Heath. I have PCR's from blood every 3 months (Approx)and a BMA annually.

Timings wise - my last BMA was done at 11am - so avoiding the full fare for the train. The connections to Denmark Hill from Victoria are very good. It might be worth speaking to the clinic directly. Forget what time you are given as you turn up go straight to Jubilee wing and have bloods taken - there is a form waiting and you are fast tracked. Then go to Clinic - they just call on a who's bloods are in and who's file is on top of the pile system. So if you arrive later you may have to wait a while, but don't incur the train fare.

HTH

Marian

vickie

I attend King's and travel up from Haywards Heath. I have PCR's from blood every 3 months (Approx)and a BMA annually.

Timings wise - my last BMA was done at 11am - so avoiding the full fare for the train. The connections to Denmark Hill from Victoria are very good. It might be worth speaking to the clinic directly. Forget what time you are given as you turn up go straight to Jubilee wing and have bloods taken - there is a form waiting and you are fast tracked. Then go to Clinic - they just call on a who's bloods are in and who's file is on top of the pile system. So if you arrive later you may have to wait a while, but don't incur the train fare.

HTH

Marian

Thanks once again for all the info, which looks like it could be helping others as well. So couldn't be more pleased.

For me, ive been feeling pretty well for the last week or so, been more active and
out and about. I have been here before, and will not build my hopes up to much, that
my knackered days are over, but take it as it comes. I think thats the best approach, as before, the disappointment of feeling grotty again, probably makes the whole thing worse. So my new approach is when im up im up! When im down, im waiting to be up!

Thanks again Michael.