Hello again,
My other half has now embarked on round two of the chemotherapy drug Azacitidine to treat his Chronic myelomonocytic leukaemia (CMML). his platelet count just before his first day was 11. Yet again he has reacted quite badly to the platelet transfusion they gave him and rather than keep giving him platelets, they have prescribed Doptelet, but the list of side-effects are very offputting has anybody been prescribed this drug and how did you get on with it?
Having read some information on the Internet regarding this drug, it is usually only given to people with chronic liver disease as a short course prior to them undergoing procedures, and also it has the very scary possibility that it could actually make his Chronic myelomonocytic leukaemia (CMML) worse.
He has come away from the hospital yesterday with a packet of tablets to take but does not want to do so, and I can see where heās coming from regarding the side effects, particularly as the haematologist did say to him that one of the more serious side effects is it can actually cause heart attack! But as usual He has not focused on what to me is the serious possibility that it could make Chronic myelomonocytic leukaemia (CMML) worse which the haematologist must have told him during their last meeting and he has only focused on the heart attack issue.
I have tried to make him see that whenever a doctor prescribes serious medication they will always tell you the most dreadful side effects as will the leaflet enclosed in the box, I have given up Reading these as all they will do is put me off taking the medication! and I think this is what is happening to him. difference being the medication I have been put on has either been for a short period of time or has not been for anything more sinister than high blood pressure or the drug itself was not that unusual, statins for example, but the idea that it could make his Chronic myelomonocytic leukaemia (CMML) worse is terrifying! Why would anyone wanted to take this drug! I would not take this if it was me and I would tolerate or at the very least learn to tolerate the occasional moderate nosebleed and some bruising, even more so, as we do not yet know whether the chemo is actually working.
Any opinion would be helpful particularly if you have had experience of this drug maybe your experience could put my mind at rest regarding whether he should or should not take this as obviously it will still have to be he decision but it would be very helpful if we could get some other peoples opinions.
Oh @Hellodolly it is always a dilemma isnāt it.
I have not heard of this medication (donāt read anything into what I have just said)
I have always found instructions leaflets would put me off taking any medication!!.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses
and I hope others will be able to share their experiences.
Has your husband got a medical contact, like a specialist nurse, that he could talk the situation with?
Please do let us know how you both get on and really look after yourselves.
Hello @Hellodolly,
Sorry to hear that your partner had another bad reaction to the platelet transfusion, what a worry for you all. Was he given a premedication this time to try to prevent a reaction?
I do have some experience with Doptelet also known as āavatrombopagā. This drug is often used to treat a condition called immune thrombocytopenia (ITP) where someoneās own immune system destroys healthy platelets. Avatrombopag is one of the newer drugs on the market for this kind of condition and is now used quite readily. Although your partner would be having it as an alternative to platelet transfusionās, unless he has also developed ITP?
With avatrombopag your partner would have his platelet count monitored regularly and the dose of the drug will be adjusted depending on his platelet response. Unfortunately, I cannot comment on the side effects and this would need to come from the treating team.
I understand your worries around a new medication especially when reading the side effects, I would strongly encourage you to have a discussion with the doctor around the risks of taking it verses the risk of low platelets. The doctor/nurse specialist really needs to go through all of this with you both so you can weigh up the options.
Will he be at the hospital tomorrow to potentially have these conversations? Hopefully they can work with you to find the right solution for platelet management.
You can of course call us on 0808 208 0888.
Best Wishes, Heidi J (Support Services Nurse)
Thank you both Erica and Heidi for your response, our local haematology unit where heās been having his shots is staffed by nursing staff and they only call a Doctors if thereās a problem so asking the nurses there about medication is pointless.
Unfortunately on day 1 of this cycle whilst waiting to get into the treatment room he had a nose bleed in the waiting room! And the senior nurse told him to tip his head back! This causes you to swallow the blood because it runs down the back of your throat! He didnāt do it and tipped his head forward while pinching his nose. How could a senior nurse give him such wrong advice? Heās phone numbers to call in case arenāt there an unless he is obviously ill thereās no way heās going to A&E. I am not happy with this hospital but thereās no other place that he could go.
Hi @Hellodolly unfortunately you have a dilemma if you are not happy with his hospital but that there is no other place your husband could go.
If you have specific complaints you might consider taking them up formally with the person involved or the hospital.
People have differing thoughts of doing this when your husband needs to be cared for in the hospital.
The hospital PALS (Patient Advice and Liaison Service) is also there for you.
Please do keep posting and look after yourselves
My OH has now been taking the Avatrobopag for about 6 weeks now and his platelets are still consistently low. Heās been binned off to the transplant hospital after theyād dropped too 9 so when he got there they were 6 and he needed a pool of platelets!
In the last week or so theyāve been 12 after two blood tests 7 days apart so I think that the Ava is beginning to do something?
Iāve been reading about this drug and Iāve read that itās not something that is used long term and is usually used prior to surgery for patients with low platelets because of liver disease.
Heās freaking out because heās got another round of chemotherapy coming and our hospital seems to have an aversion to blood tests, so heās worried that they wonāt monitor his bloods, they didnāt do a blood test after his last chemotherapy round finished so he came back home without knowing what his platelets were like after. In fact heās has gone from two blood tests a week (this stopped before he started having chemotherapy) and now only has one before an appointment with haematology or on day one of chemotherapy! So whatās that two or three times a month!
Is this normal? When his platelets have been so consistently low even down to 4 on one occasion and 6 on another both in the last 6 weeks!
We are sorry to hear that your partner is going through a difficult time and that his platelet count has been low. I can imagine this is frustrating for you both.
Itās good to hear that he has maintained his platelet levels of 12 for over a week and this could be due to the drug working or his recent platelet infusion.
I would perhaps speak to the haematology team/ clinical nurse specialist with regards to blood monitoring. Patients having chemotherapy would often have their bloods taken either on the day or 24-48 hours before chemotherapy, and unless required to, would not frequently check bloods immediately after chemotherapy. They may however repeat a full blood count, to check platelet count after an infusion of platelets to ensure that his platelets have increased which helps to check the āsuitabilityā of the platelet infusion.
Due to his ongoing low platelet count, they may want to check his bloods weekly, or more frequently if he was having any signs of bleeding etc. We would advise speaking to the haematology team about this, but if patients have consistently low platelet counts due to disease and are not having signs of bleeding, the haematology team may not need to check bloods as often. They will make āindividual parametersā for each patient, so it would be worth speaking to the team to see what these are for your husband.
If you feel you need more support you can call us on 0808 208 0888.
Thanks for the reply, heās been getting some minor nose bleeds but these stop in10 to 15 minutes, heās covered in bruises that last weeks some from blood tests and some from chemotherapy injections. He hasnāt been allocated a specialist nurse other than the chemotherapy nurse who can only do whatever the doctors say so canāt order blood tests or platelets but has to work within the rules.
Iāve found it hard to phone the haematologists and usually get no reply. Iāve been pinning my hopes on the Avatronbopag to increase his platelets but of course the chemotherapy strips them quickly which is why I felt that he was ābinned offā because our local hospital knew that he had an appointment with the transplant unit a few days later even though they knew that his platelets were only 9 several days before this appointment.