I've been on peg since January this year. I started on 45mcg and everything was fine. Then in his infinite wisdom the haemotologist decided to double the dose. My breathing was very slowly getting worse, to the point that in early August I told him about this to which he replied "oh I don't think that's a side effect". I insisted it was and so he looked it up and embarrassingly had to agree, carry on with the dose he said. I knew something wasn't right so I phoned the specialist blood nurse who immediately told me to stop taking it and arranged a CT scan. That showed fluid in the right lung. He then arranged an echocardiogram. I had this and was immediately told an ambulance was on its way forme as my heart was failing. After 16 days in hospital and a heart MRI I was diagnosed with heart failure, i had an EF (ejection fraction) of 15% , it's a miracle I never died. This doesn't just happen, something has to cause it. There are 4 main reasons, heart attack, virus, drinking and medication. 3 are ruled out only medication remained. I am now on heart meds for life and there's no guarantee my heart muscle will improve. I have no ischemic heart disease. To say I no longer have any confidence in that haemotologist is an understatement, I'm very, very angry.Then if that wasn't enough, we found out my wife's cancer has returned .
Gutted.
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conno61
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Very sorry to hear about his horrible experience. Unfortunately, Pegasys can cause lung and heart problems. Any doctor managing a patient on PEG should be aware of this and monitoring the patient properly. Continuing on the same dose without checking on a reported symptom of difficulty breathing is negligence. You would be justified in filing a formal complaint and/or considering legal action. It is a very good thing that you followed you instincts and insisted on taking action. The consequences would have been far worse otherwise
Sorry also to hear about the recurrence of your wife's cancer. Wishing you both success in managing your health moving forward. Please do let us know how you both get on.
I really feel for you. I noticed when they upped my dose of peg that my breathing got worse so they agreed for me to drop it back to 65. However by the time I was three years on my breathing had got steadily worse. I hadn’t noticed just how much until I stopped the Pegasus. it’s one of those side effects that the haematologist should listen to you about. So sorry to hear about your wife too. We are all here to help and support
So sorry to hear of such hardship, I have tears for you right now. My IFN journey was similar in that my Dr insisted on 140 of Besremi, while my body told me 70. He even wanted to go to 200 but WBCs prevented that. I never felt good at 140 but complied and nothing serious arose. Then it blew up on me in just hours with minimal prior warning, so I can't pin it all on the Dr. You may have read my experience, a botched vax was a contributor with the IFN to my permanent new disease.
Your blood counts were fine at 45, right? Is your EF improving at all yet?
I wish we both could go back in time and tell our Drs what's real. I asked about it not long ago and he just said "it wasn't that high a dose". True but it was too high for me. These experiences are why I call IFN an "interesting" med, in contrast to Rux for example which is "Boring"
Best we can do is help other members pay attn to the messages our bodies give us, esp while on IFN, and when that message is not right, speak up and act fast to prevent long term adversity.
So sorry for this horrible experience and what it has caused i would complain and hope your wife is ok and they get on the right care so you can move forward
As per the comments above so sorry to hear you sad news. It's good you advocated for yourself which is a lesson for us all. Please do make a complaint if only to get that department to learn lessons. Ignoring the paitent is wrong but all too prevalent in doctors.
8 years ago when my doc wanted to raise me from 45 mcg to 90 mcg I ignored him and went to 65 mcg for several weeks before trying 90. I've been at 90 for 8 years with no side effect problems and a recent echocardiogram and EKG revealed no problems at age 71.
Conno61's story is one more example of why we all need easy access to an MPN specialist. If you don't have a specialist you are risking your life.
I had a very similar experience on PEG. I had/have an idiot hematologist/oncologist here in the US, who wouldn't listen. I'm alive today because I got help from this website 2 1/2 years ago when he messed up my first attempt to transition form HU to Peg.
He messed up the second transition too. He kept wanting to increase the Peg before the effects of the current dose had time to take effect. I had many side effects from the meds, including shortness of breath for 2 years, and I coughing up fluid for 5 months. The idiot Dr wouldn't believe that it was due to the Peg, even after I told him that the paperwork for Peg said that Peg can cause lung issues. What's worse, I had been on a high dose of HU, which also is known to cause lung issues. I pointed that out to him too, and also to my GP. Neither wanted to know.
After a particular bad coughing episode, bringing up large amounts of pink fluid, I went to the emergency room where I got a CT scan. My lungs were 2/3 full of something and I was told I had an enlarged heart. I had follow ups with lung and heart Drs, who acted more to protect their colleague and the healthcare organization. They refused to tell me the full extent of the enlargement of my heart (most likely permanent) telling me "I'm not going to answer that question" or "I'm not expert on the numbers". They also refused to acknowledge the damage to my airways, instead labeling it atypical asthma. I never had asthma in my life. I had collected the solid bits I had coughed up, which looked like the lining of the airways, to show them. They just shrugged and threw them away. 18 months later, I am still coughing up fluid everyday due to the damage.
Also while on Peg, I had autoimmune related issues (ignored by the Dr) that contributed to rapid progression to MF and the need of a SCT.
My single dominant emotion for a year was anger. That was then joined by fear when I learned I needed a SCT. At this stage, I don't trust any Dr, any hospital or any healthcare organization. Unfortunately, I need them to stay alive.
As Hunter points out, your situation is the result of negligence. Even if you take action to deal with that then you will still have the physical damage. If I thought I could get satisfaction by suing for negligence I would but I don't want to spend years of what may now be a short life dealing with lawyers.
The problem is these clowns of Drs are still out and will continue to mess up.
On our (MPN family) diagnosis we all start a reeducation program (thanks to Hunter and EPguy) so it only good for us even if you inform your haematologist of the history of your experience so they can be educated further as well. Especially when it comes to symptoms to look out for. That's got that out of my system.Personally, (and nowhere near your close call) I think there was confusion between the consultant/specialist nurse/pharmacy, because my dose was double than it should have been. After several weeks of initial regular blood tests I got a call out of the blue to extend the time between injections. The plts had gone down too far, so not a bad phone call to get. Eventually on a stable dosing level. So after having a conversation with the pharmacy, I got a follow up call from the specialist care nurse who went through all my previously known symptoms and side effects.
Peg update: the shortage of doses in UK meant that after my last dose (every 10 days) it was a further 25 days before I received a call from pharmacy to say they had allocated me 1 of their 20 for the month(s?) for the whole number of MPNers in my region.
Having read today about leg pain (that I have developed) that I thought was due to physical exercise, might now be related to peg and/or unnoticed change.
Hope you and your wife can see this through and wish you both well.
So sorry to hear this and your poor wife too. Sending my very best wishes and hope you both find good treatments.
It’s really very important every patient reads the package insert, or look online for all the possible side effects of any drug treatment your given, so you have some idea or what might occur and can then raise the alarm asap , hopefully before permanent damage occurs.
It’s also important to report these side effects to the relevant countries organisations: yellow card/ vaers etc. this really helps with patient safety as currently, side effects are massively underreported, at worst 1% are reported , at best 10%. Clearly this does not refer reality.
Your dr should also file a report, so worth checking if you have the energy .
I also had a useless harmatologist so haven’t seen any in a couple of years now, so fully relate to your lack of confidence.
Dr William Makis MD is a great resource for cancer options. Worth checking him out on Substack.
My case points to no built up warnings at all, nor label risk factors, before the permanent damage, I don't have a solution except to assume the worst and act fast. This may preserve the option to re-start
I agree on reporting. I've also reported to VAERS the flu vax that started it all. Supposedly Drs are also to report, but I doubt they take the time.
Thanks for asking. I'm optimistic on the Sjo with lots of trials on various Tx going or starting just past year. Cell therapies, related to those starting for CALR, are proliferating for A-I disease, where it seems even more potent than for cancer. Look for Car-NK (vs CAR-T) for CALR-ET some time soon.
But my daily experience is a life splat and currently Sjo is a nonstarter on getting better. The MPN excludes me from the trials.
So sorry to hear about your awful experience. No one should have to experience that. That doctor should not be practicing. I’m glad you were proactive and that you’re still here to tell your story. Wishing you the best moving forward.
Also, so sorry to hear about your wife. What a difficult time for both of you.
I am at a loss for words concerning what the Doctor had to say. I don't know if anyone in this field does anything but guess what to do. Since I have been on hydroxurea for a super high platelet count* one million plus) since February, I have had carotid artery surgery on the right side [80 percent] blocked. Next my bloodwork shows I am supposed to have Crohn's disease. I am just about at the point of saying if the Doctor's will not listen to the concerns we have then find one that will. Sorry for the rant . I will be praying for you and your wife down here in southeast Alabama. HE knows no limits for healing. Have you quit taking the doubled up dose? Are you taking what you started out with or taking any Peg at all?
Thanks for letting me know. They told me Tuesday to up my dose to 1000 mg of hydroxurea every day. When I took that this morning I just about could not stand the smell of the capsules and just about threw them up. I will do this till I see the nurse practioner next week, If they have not dropped I will quit them.
I've a feeling they're going to try and put me on that crap. I've told them from the outset I don't want to take hydroxy, they thought it strange I didn't want to take chemotherapy every day for the rest of my life.
That is what I told them . I told them I would try it. This is not what I want till I leave this earth. I read the side effects and one of them is stay out of the sun. Good LORD I am an outdoor person, working or going to the beach ⛱️ 80 miles from me. Sometimes that stuff just makes me freaking sick and I am already tired of it. I also take 81 my aspirin. I just need to get my desire to drink water again. This stuff has killed that in me. I will know next Thursday if I will quit this stuff. If there is not a significant drop in my platelets I will stop this stuff.
Heartbreaking that this could have been avoided. I am just so sorry that you and your wife are going through this. Hopefully the future news for you both gets better.
I'm so sorry to hear of your experience and about your wife's health. The lack of knowledge of MPN's and associated treatments amongst haematologists is scary and I think people should automatically be assigned a specialist in the condition that they are diagnosed with. I moaned a few weeks ago about the consultant I saw but I have no room for complaint compared to some experiences.
I hope your situation and health improves and also that your wife gets quick and effective treatment. Best wishes to you both.
OMG, your story and the responses terrifies me. Why are doctors put in a position of managing complex conditions when it is evident they are not experienced enough to manage them, surely the responsibility lies with the organisation that employs them and PUTS them in this position. I really feel for you, what has happened has changed things forever in your case. I am another who has been transitioning from HU to pegasys. 45mcg every two weeks for a year but increasing platelets has called for an increase in dosage 90mcg every two weeks. With the global shortage it was suggested 180 mcg every four weeks to save on wastage ....no way!! I weigh 6stone 11 pounds, my slight frame would not tolerate that. But over the last few months I have noticed some changes, as a regular cyclist for over 45 years I have noticed when I first go out and hit the first climb there is a little bit of a 'blip' like a palpitation followed by a cough, and sometimes the mild cough irritation continues. Mentioned it to the haematologist who said I should go to GP and ask for an ECG (I had asked if it was a side effect of PEG but did not get a response to that). Had ECG at GP surgery carried out by health care assistant who advised all was normal to which I responded that it only comes on when under physical effort...oh well in that case you will have to see the doctor. After reading your story I think I am going to contact the MPN specialist who I have a shared care arrangement with (which I requested). AS a retired clinician in the NHS I know that often clinicians were put into situations of which they had very limited experience because of staff shortages, as I drew closer (and wiser) to retirement I refused to do it highlighting it as 'unsafe practise'. Very best wishes to you.
You should definitely follow up with your MPN specialist asap.
I posted above on my very similar experience to Conno61. I used to be a very physically fit cyclist. I first noticed my shortness of breath issues while riding up hills and at the track. I complained to my GP, had an EKG that looked much the same as a previous one and so was told there was no problem. There was a problem. No matter how much I complained he wouldn't believe me because I was still riding my bike around. I appeared to be too fit to have shortness of breath issues. They compare me to the general population instead of my past state of being. Here in the US, with more then a half the population significantly overweight or clinically obese that standard of fitness for the public is very low.
Thanks for your reply, I admit to being very worried about this and you are right they compare you with the general unfit population and there cannot possibly be anything wrong when you tell them you are doing 50 mile rides three times a week plus other stuff. As someone who has exercised regularly over many years you become very finely tuned to your own body and what it is telling you. May I ask what happened next as far as your situation is concerned. Best wishes.
I wrote a good bit above to Conno61 about some of the screw ups leading to my situation, which hasn't changed. I have a permanently enlarged heart that none of the medical staff will acknowledge as a problem and won't investigate further. I have coughing fits every day, bringing up frothy sputum, that has been labeled atypical asthma and won't be investigated further. It's all about the liability and the $$$s. The coughing is worst when I try to get a bit of exercise, which now amounts to only slow walking or slow biking. I now have to get off the bike and walk up the hills. Those issues are made worse due to anemia from the MF and the Rux that I am now taking. All of the really fun things I liked to do are gone.
Due to the accelerated bone marrow fibrosis I've been told I need a SCT much sooner than should have been needed. The SCT would be done at a different and well respected hospital but dealing with them leaves me feeling like a lump of meat that they are trying to process in their sausage factory. Even if the SCT works then I will still be stuck with a damaged heart and damaged airways. At the last assessment they told me I had about a 45% chance of coming out of the SCT OK, but still dependent on meds for years. I'm not sure it is worth it but the alternative is to just sit around and wait to die.
Act now. Talk to your Drs. Use the paperwork that comes with Peg to make the point. Tell them the stories of Conno61 and me, and don't let it happen to you.
Similar here. I wasn't that athletic but lean and muscular. I could jump around like a college kid and do heavy physical work, it was part of my personality. The MPN took it down some but the autoimmune finished it off. The MPN is from who knows what but the IFN adversity was totally avoidable for the lot of us.
Thank you so much for your advice and I am very sorry that you have had to go through this , quality of life is everything, I have no idea how I would cope if I could not carry out my activities. I think I have already made a decision about where I am going with my Peg journey, the conclusion of which I have come by way of the stories people like yourself have shared on this site. Best wishes.
So very sorry to hear this. Terrible news. We are all going to need to monitor ourselves very carefully on our double dose of Peg. Report any issues to our mpn specialist. It is frightening. But what can we do?. Their expertise is what is going to govern our future for the moment in this shortage of Peg. Hopefully, soon we shall have an alternative. X wishing everybody in this situation the best .
conno61 and all the others here who have reported your painful stories, thank you for sharing them, which helps all of us become more aware. Sorry to hear you are having such a tough time due to a dr.s negligence.
So hear what you and your wife are going through. Thanks to all who shared their stories. While Pegasys has been very effective for many of us, it is a powerful drug, and we have to remain vigilant, to make sure we are heard and taken seriously, with any concerns.
I wish you and yours the best for your health and happiness.
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ET diagnosis without biopsy
Absolutely different experience entirely!
A month into Pegasys, Australia …
