Hydroxyurea induced pneumonia

[Sian64]

Hi all. Apologies for the long post. I'm in this group as my husband has PV JAK2+, he started Hydroxy chemo tablet on the 31st of Jan this year. On the 21st of Feb he was admitted to hospital with suspected pneumonia/flu, he was taken off the tablets and discharged on the Saturday not to take them again until his hemotology appt the following Wednesday, he was then admitted again on the Monday, discharged on the Tuesday with suspected UTI and flu again. Having been instructed to start the tablets again by hemotology, he took one on the Wednesday and another on Thursday only to be readmitted now with sepsis. Taken off the tablets again he responded well to the antibiotics and seemed to be on the road to a good recovery. A ct scan from the Friday showed ground glass effect on lungs so referal made to respiratory. Hemotology then advised to take the tablets again on the Monday, again on the Tuesday, he then relapsed Tuesday night with infection markers increased, very high temp and low stats. Medical consultant kept querying the tablets, however hemotology were insistant that there was no connection. He is now off the tablets again and showing all good signs of recovery, med consultant is adamant that its Hydroxyurea induced pneumonia. We have found the below case and it seems this is so rare. With this post I am asking if anyone has any experience or heard of this? Also to make people aware of this too. He niw feels well with stst almost normal but hemo again advised without seeing him only talking to Dr on ward for him to start HU again as u can imagin he is very aprehensive incase of a recurrence Thank you in advance to anybody taking the time to read my post. Sian

[Stevesmum42]

Hi Sian. Oh my your husband and you have been through the mill. Sounds very worrying. How can there not be a connection between Hydrox and all his problems ?

I would certainly request a change of haematologist .....how can you risk another hospital admission. The differing opinions of heamotologists is really amazing.

All these drugs seem to have different effects on different people. I have been on Hydrox for many years with no problems, but many on here cannot tolerate Hydrox .There are other drug options for your husband , cannot understand why an alternative has not been offered.

Wishing him a speedy recovery . Regards to you both Sandy

[Sian64 in reply to Stevesmum42]

Thank you for your kind reply Sandy, my husband has now been discharged but on advise from heamotoligist yesterday he took a chemo tab at 9 this morning only to be told on discharge not to take them until he sees them next week ! By 3 oclock today his temp rose from 36.7 to 37.8 and feeling nauseous shivering as he did before but not as bad, therefore we are of the opinion it is defiantly a reaction to the HU. I have done some research and with the help of another member of this group have documentation that we will present to his heamotoligist. I have also a name of an MPN specialist in our area. His consultant who we found out at his last appointment has not been at the hospital for a year but yesterday was finally advised who is consultant is but did not at any point during his stay in hospital come to see him. We feel we have lots of questions that need answers. Thank you for listening . Sian

[Stevesmum42 in reply to Sian64]

If proof were needed your husbands latest reaction to the meds, there it is. You certainly know for sure now.

So glad you are seeking another Heamo. You certainly do need answers. I hope this reaction will be included in patient info sheets.

I hope he gets settled on an alternate med soon.

Best wishes Sandy

[stillkicking]

Hi Sian,

Sorry that your husband has been so unwell, it will have been a very worrying time for you both. Regarding Hydroxyurea and lung problems, I was fearful some months ago that I might have a respiratory problem due to this medication so did look it up online and find some well documented cases, however it was incredibly rare. I did ask my haematologist about it, but she seemed in complete denial of it ever happening, which annoyed me as I knew she was wrong, however she may well have never encountered it in her practice as there have been so few cases. Happily for me I am OK now and my problem must have been caused by something else, but I can see why you are concerned. Can your husband be given pegylated interferon instead of the hydroxyurea?

Kindest regards to you both,

Peter

[Sian64 in reply to stillkicking]

Hi Peter , my husband has now been discharged but on advise from heamotoligist yesterday he took a chemo tab at 9 this morning only to be told on discharge not to take them until he sees them next week ! By 3 oclock today his temp rose from 36.7 to 37.8 and feeling nauseous shivering as he did before but not as bad, therefore we are if the opinion it is defiantly a reaction to the HU. I have done some research and with the help of another member of this group have documentation that we will present to his heamotoligist. I have also a name of an MPN specialist in our area. No other medication has been discussed. His consultant who we found out at his last appointment has not been at the hospital for a year but yesterday was finally advised who is consultant is but did not at any point during his stay in hospital did he come to see him. We feel we have lots of questions that need answers. Thank you for listening and your kind reply. Sian

[Swede]

Hi, sorry you have had to go though with all that! My doc. says that it takes about 3 to 4 weeks before Hydroxycarbamide does anything, so I am surprised it would show as quickly but what do I know...Hope everything gets better for you!

[Sian64 in reply to Swede]

Hi, my husband has now been discharged but on advise from heamotoligist yesterday he took a chemo tab at 9 this morning only to be told on discharge not to take them until he sees them next week ! By 3 oclock today his temp rose from 36.7 to 37.8 and feeling nauseous shivering as he did before but not as bad, therefore we are if the opinion it is defiantly a reaction to the HU. I have done some research and with the help of another member of this group have documentation that we will present to his heamotoligist. I gave also a name if an MPN specialist in our area. We just want the correct treatment for him. Thank you for your reply.

[Lyineyes]

Very sorry for all the problems he’s experienced. I’ve only been on it a couple weeks with very little side effects.

[Ebot]

Gosh, it’s been a really tough time for you. It sounds like he needs to see a top MPN specialist. I would definitely be asking for a second opinion. It’s ridiculous to be in the middle of two disputing practitioners. MPNs are rare enough without having the added complication of a potentially rare reaction to the drugs. Where do you live?

[Applesnpears]

Hydroxyurea does suppress the immune system so it will put your husband at greater risk of infection. There has been a lot of influenza around this year and the flu vaccines have not given much protection so it might just be coincidence that your husband caught flu shortly after starting hydoxyurea. Being on hydroxyurea will probably make it harder for your husbands immune system to fight an infection, viral or bacterial.

All that aside there is a lot of information around which says hydoxyurea can cause increased temperatures, nausea, shivering. It can also cause lung problems including fibrosis. Look at the cancer research uk website and search for hydoxycarbamide (another name for hydroxyurea).

Hydroxyurea is not suitable for everyone and there are other options but you may need to see an MPN specialist to find something suitable for your husband.

Best wishes to you both.

[Richinspirit]

oh dear- so so very sorry to hear what you have been through. Not everyone can tolerate all different types of drugs - even the most tried and tested ones.... your husband could be one in ten million (who knows!!) who has an intolerance to Hydroxyurea, but if he does, then he does. So, change your heamotoligist or get a second opinion. There is no doubt about the good that Hydroxyurea does for the majority of folk but if hubby isn't one of them then nothing can or will change that. Do hope you find an alternative ..... best wishes.

[hunter5582]

I have experience with JAK2+PV and Hydroxyurea. I am coming off the HU for similar reasons. HU compromises your immune system. It is therapeutically weak, so the doc has to keep you on the edge of toxicity for it to work. Sounds like your husband is HU intolerant. Many hematologists have limited experience with MPNs. I had to switch to a doc who is an MPN Specialist/expert. He told me to get off the HU ASAP and that he would not prescribe it to anyone! HU is an old standby and it is cheap - so less knowledgeable docs still use it. BTW - it also has other worrisome side effects like: constipation, mouth ulcers, thrush, possible hypogonadism (decreased sperm count, decreased testosterone). These side effects are usually (but not always) reversible. In addition - it is a mutagen and a carcinogen (note skin cancer risk). It is also a teratogen (birth defects) - men have to wait one year post-HU to avoid problems. If you are still sexually active, HU passes into sperm so condoms are recommended for sexually active couples. NOTE: HU is so toxic/teratogenic that if a woman of child-bearing years handles the bottle, she is supposed to wear gloves. There are much better chemo options if it is really needed - peg-Interferon and Jakafi are worth considering. Also worth considering is finding an MPN expert near you. All the best to you and your husband - hope all goes well for you both!

[Sian64]

Hi, many thanks for taking the time to read my post and for this invaluable information. I have today emailed a specialist haematologist and I await eagerly for his response. I find this forum a great help just knowing and able to speak to people who actually understand as I found with the hospital not even Drs know little of anything about this disease. Thank you again and I will certainly post any updates. Sian

[dscotese]

There is a Dr. Tefferi (Ayalew Tefferi, M.D. - Mayo Clinic) who recommends NOT treating ET unless there are symptoms. I am following his advice, against the advice of my oncologist, but in agreement with a third doctor (Laurie Blanscet) who is a friend of mine. We make EXTRA platelets to deal with all kinds of things, including illness and stress. EXTRA means "abnormally high" but does NOT (necessarily) mean "unhealthy." Treating asymptomatic abnormalities is a bad idea in my book, but it seems like a money maker for the medical industry. Learning the signs of stroke and other problematic symptoms (enlarged spleen, neuralgia in extremities (fingers and toes), etc.) is probably the BEST thing someone with ET can do, and when those show up, aspirin and maybe other drugs are appropriate. But I'm not a doctor, just someone who loves doing research.