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frequency of follow up? What’s normal?

I am having some concerns about my medical follow up since being diagnosed 29 October. I had bloods taken with high wbc 139 and platlets all over the place. Enlarged spleen and minor enlargement of liver. Had a bone marrow biopsy to confirm stage which was chronic moderate. I saw the consultant three weeks ago for the first time and then told to return three weeks later (this week) to have bloods reviewed. I was not booked to see anyone and ended up cornering a haematologist in the hallway and wouldn’t let him go until he had answered my questions. The blood work showed I have made huge progress in  just one month of taking the Nilotinib and my wbc is at normal which was great news but as far as I am concerned that doesn’t mean I don’t need monitoring.

i wanted to discuss diet - no luck there

i want to know if I can come off the urea meds (can’t remember the name) which I had been told on this site would happen after a month as the initial purging of the bad cells would be complete. Was told it was my choice.

They have now arranged to see me for a blood review in mid Feb with nothing in between except to continue with Nilotinib. I thought I should be having fortnightly reviews for the first three months?

 

I am a bit concerned about the lack of follow up despite the good result from this recent test. Should I be more proactive or just go with the flow. Your thoughts would be appreciated.

Where are you treated? Just the country if you're not comfortable saying the hospital.

ELN guidelines would say the following schedule should be used, at a bare minimum. These guidelines are due a refresh though, and I'd expect them to change. 

At diagnosis:
CBA, FISH in case of Ph- (for cryptic or variant translocations), qualitative PCR (transcript type)

During treatment:
RQ-PCR every 3 months until MMR has been achieved, then every 3 to 6 months and/or CBA at 3, 6, and 12 months until CCyR has been achieved, then every 12 months.
Once CCyR is achieved, FISH on blood cells can be used.

I’m being treated in Oman in The Middle East. They said they wouldn’t give me a PCR until three months post Dx. I have nothing to go on, no one to ask except the poor guy I accosted in the hospital hallway who has probably resigned out of fear that I find him again. I just felt that three months after diagnosis was too long without follow up.

Fiona, the need for PCR at diagnosis was discussed at the Birmingham Conference in one of the Q&A sessions - sorry can't remember which. The solid consensus from the clinicians was that it made sure that any unusual variations were identified early and could be addressed promptly. If your current clinicians haven't done a PCR do you know what test they did to be in a position to say you are doing very well I assume FISH - do you have the actual test results? As David has shown they haven't followed the European guidelines, and from memory the USA ones (which may be more likely to be used in the Middle East) match the European ones. 

I think you are right to be concerned, but if you continue to respond well it may be fine in the longer term. That doesn't put your mind at rest on the subject now, and therefore if they are not willing to change I would be investigating other options if I was in our shoes. If you are on a healthcare insurance scheme, can your insurer help?

Hi Fiona,

Usually your blood is tested more frequently when beginning treatment to make sure you aren't having any dangerous side effects.  Here's a quote from the Tasigna package insert:

"5.12 Monitoring Laboratory Tests
Complete blood counts should be performed every 2 weeks for the first 2 months and then monthly thereafter. Perform chemistry panels, including electrolytes, calcium, magnesium, liver enzymes, lipid profile, and glucose prior to therapy and periodically. ECGs should be obtained at baseline, 7 days after initiation and periodically thereafter, as well as following dose adjustments [see Warnings and Precautions (5.2)]. Monitor lipid profiles
and glucose periodically during the first year of Tasigna therapy and at least yearly during chronic therapy. Should treatment with any HMG-CoA reductase inhibitor (a lipid lowering agent) be needed to treat lipid elevations, evaluate the potential for a drug-drug interaction before initiating therapy as certain HMG-CoA reductase inhibitors are metabolized by the CYP3A4 pathway [see Drug Interactions (7.1)]. Assess glucose levels before initiating treatment with Tasigna and monitor during treatment as clinically indicated. If test results warrant therapy, physician should follow their local standards of practice and treatment guidelines."

Kirk

Thanks for your replies.

The only testing I have had done since diagnosis is a full blood count and I was given copies of the lab report to interpret myself. I haven’t had any formal consultation since following the bone marrow biopsy. I’m sort of ok about it if this is the norm but I also don’t want to wait  another 2 months to get  a follow up blood test. I am on private insurance  with my husbands company who pay direct so don’t have a choice on where I go but the hospital I am under is considered the best for all forms of cancer treatment. My only other option is to go fortnightly to  to the lab to get blood tests done myself, which I can do and do my own monitoring.

i do want a PCR done so my other option is to fly to the UK for a consultation for reassurance that everything is as it should be.

i hate all this decision making LOL

HI Fiona,

My tests so far for starting Nilotinib.

Started on Hydroxy and Allipurinoal for 3 weeks until counts were normal-ish. WBC 330 and platelets 800 at DX massive spleen. Biopsy confirmed Chronic phase. Phhewww! Stopped hydroxy.

Started Nilotinib and didn’t have a blood test for a month after commencing. Stopped Allipurinol. Was a nice surprise to see all my counts were completely normal by the time that I had that consultation. Continued to have monthly montiroing at my local big C ward. They take my weight, BP and blood and ask questions about symptoms. If test all good they prescribe next months supply of tablets. NHS cost £10k a month I am told!

Had a 3 month PCR blood test at month 3 on Nilotinib. A month later for the results and presenting 2.1% BCR. Pheww!

Continued monthly tests at the ward same as mentioned above.

Had a 6 month PCR blood test at month 6 on Nilotinib. A month later for the results and presenting 0.7% BCR. Pheww!

Now that I have had a 2 log reduction I no longer have monthly testing. Next time I see my consultant and have a blood test will be my 12 month PCR for results. Glad to be left alone each month and I now get my meds delivered by healthcareathome. It was a nightmare getting my tabs monthly 80% of the time the pharmacy didn’t have them when I was scheduled to pick up. It’s certainly all anxiety inducing. The road is bumpy but will get better with time.

In terms of diet anything goes in moderation but only in the non fasting period while on Nilotinib. No grapefruit juice or Seville Oranges at all. I still have alcohol from time to time but I don’t have big benders anymore. Drink plenty of water per day. I have a min of 2 litres. Helps with symptoms and gives your kidneys some help. Some people on here swear by suppliments my consultant said they don’t do anything. I bought some Curcumin but not take yet am a little paranoid it'll effect my meds. Was going to wait until I hopefully hit MMR. I do personally think they’ll help even if it’s placebo.

All the best

Alex

Thanks guys. I knew I could get answers on this site. I will do my own blood counts for the next month and insist on a PCR at my next appointment mid feb and hope all good from there. Cheers

 

Fiona,

One thing worth knowing about PCR tests is that they are difficult to compare between different labs - even when you factor in the "international standard". 

So ideally you want your first PCR test done where you expect all the follow up overs to be done. 

David 

Hi Fiona,

Just a quick one to add from my experience and a scenario where I’ve been lucky I’ve been monitored closely.

It’s good to make sure you keep an eye on your complete blood counts, at least initially as the drugs can have unwanted side effects in a minority of people, and I do mean a minority but it can happen. I’ve been on blood tests every 4-5 days of late due to a significant drop in my platelets after switching to Nilotinib, to the point it became dangerous and I’ve been off any treatment for 3 weeks now. I’ve also experienced slight nose bleeds and difficulty stopping even small cuts. My consultant warned me to be very careful of banging my head due to bleeds on the brain. It all sounds very dramatic and actually overall I’ve felt pretty well but i’ve just known an underlying problem has been there, although we only knew about it from the blood tests.

I must stress again this is in a minority of people and my platelets had to get very low before action was taken. I do believe it’s unusual and I’m sure you will be absolutely fine and do great. For reference if you do end up doing your own monitoring a normal count is anywhere between 150-400 on all the tests I have taken. I was stopped treatment at 34, got as low as 21, last test was 28, and my consultant ideally wants me above 50 before starting again.

I’ve been told there are several reasons this could happen and the doctor seems fairly sure the figures should rise again and stabilise. I feel for the first few weeks/months regular testing is advisable. Maybe someone else with more experience could give better details of the guidelines??

I am treated in Middle East and I have the same problem. I always have to try really hard with my doctor to get a pcr test. Most recently I have come off my medication and doctor still refuses to do more frequent PCR testing 

I encourage you to travel abroad and seek help of cml specialist. I didn’t do that I should have and now am suffering from serious GI issues which could be been resolved earlier if my doctor would have reduced the dose or would have listened to me. Every time I complained about a side affect I was referred to a psychiatrist which to this day I will never understand

 

@Fiona

your concerns are well founded..

as RC KİRK mentioned , for the first two months monitoring should be more frequent. at least for CBC.

according to prescribing information of TASigna Revised: 12/2017

https://www.accessdata.fda.gov/drugsatfda_docs/label/2017/022068s026lbl.pdf

page 1 

Myelosuppression: Associated with neutropenia, thrombocytopenia and anemia. Obtain CBC every 2 weeks for the first 2 months, then monthly. Manage by treatment interruption or dose-reduction

Also other blood tests written on that page like liver and kidney function tests etc ( lipid profile , glucose ..)

because a dose modification or stopping the treatment will be needed with results of this tests . ( not sure about chemisty panels ) 

 

At Turkey , unfortunately can be called a middle east country ... 

For the first month of treatment my mother blood work ( CBC , Full chemisty panel ) has been done once in 2 weeks . 

at the end of her first month they reduced her dosage from 400 mg to 300 mg ( GLİVEC ) ( was not neutropenic but her neu count was dropping too fast ) 

then follow ups were once in a month .. sometimes just CBC , sometimes CBC + chemistry

except when she was neutropenic like at 5th month of treatment . they stopped the treatment for a week , did tests and resumed at 200 mg . then 2 or 3 weeks after another test and they put her back to 300 mg. 

after she achieved MMR ( at 12th month ) our follows ups are every 3 months .. 

 

PCR TEST 

at least , they follow the protocol here . nothing to worry there . like david said .

RQ-PCR every 3 months until MMR has been achieved, then every 3 to 6 months.

 

they used FİSH just two times since her treatment started ( first @ diagnosis then @3rd month due to lack of PCR kit ) 

now we are on every 6 month schedule for PCR.