Megestrol Madness

I'm afraid that I don't know anything about megestrol but I'm sure that someone will be along soon who does. I'm also type 2 diabetic but I also have non alcoholic cirrhosis of the liver. I had severe stomach and back pain and my GP sent me to A and E as he thought it was pancreatitis. I was told it was a kidney stone as there was blood in my urine sample. I was given codeine and told to return if the pain persisted. I went back the next afternoon, given morphine and sent to CT as they thought it was appendicitis. They saw a mass on my uterus and sent me straight to the gynae ward. I had a biopsy and an MRI scan which caused concern. They had a meeting with the Christie hospital who said it was a cancerous fibroid. I should have had my hysterectomy two weeks ago but when I had my bloods taken at the pre op assessment my blood sugar levels were really high. I think that I felt that three serious conditions were too much and subconsciously decided to ignore one of them and it was the diabetes!? My op is now scheduled for Tuesday as I've low carbed like crazy to get within normal blood sugar levels. Years ago I was prescribed steroids and my blood sugar levels went sky high and I ended up on insulin. Both of these make you gain lots of weight. I managed to get off them and will never take steroids again, they make you fat and angry!!!

I hope you get the appropriate treatment. Stress also affects your blood sugar. Deb

Hi Deborino. Thanks for your reply. That must have been scary for you being in so much pain and not knowing why at the start. It was interesting to know about the sugar levels that need to be normal for the hysterectomy, I'll remember that when the time comes for me. I've noticed my glucose has come down slightly after only a week of being off the Megestrol so I'm hopeful that will continue. I hope your operation goes OK and you recover well with some good rest after all that horribleness. Take care and thanks...  

Hi F4Fruitcake and welcome to our spot in the Online Community. Having read both your post and your profile given your medical background I'm amazed you were given Megestrol. I'm not medically trained but to experience the weight gain you have since February is not good for your health. I would urgently seek a second opinion. If you've been telling your Oncologist for months your concerns and they've been ignored that's not right. Get back on to your GP and make a noise. 

I've put on a link to Megestrol and the article does state it's important not to stop without telling your Doctor so I wouldn't just stop taking them as they act on stopping the cancer growth.

Sending hugs, B xx

Hello MrsBJH. Many thanks for reading my post/profile and for the reply. I'd seen my Oncologist last Monday and after asking him again about the Megestrol he agreed that I could stop taking them for 3 months but there is a risk with having no treatment at all now. I'm seeing my GP soon and I'll be pointing out that I feel this has been a shambles right from the start. My GP is brilliant but I feel she can't interfere with decisions made by the Gynaecology team. I wrote a letter to my Oncologist in March but it mysteriously disappeared into thin air  - I only found out about that in May at an appointment - things could've been sorted a lot sooner otherwise. I still think I wasn't listened to at other appointments but I have to keep calm and carry on. Funny thing now is, I've been referred to a Weight Management clinic as an urgent case - unbelievable. I'll have a look at the article, thanks for that, you've been really helpful. Take care and have a good day....x 

Hi F4Fruitcake,

I just thought that I’d share my experience of taking Megace (Megestrol) with you. Long story short, I was diagnosed with incurable endometrial cancer back in 2017. Because my situation was a little bit unique, I was referred to the Royal Marsden for a second opinion. It transpires that there’s very little evidence out there that shows chemo is effective when treating a low grade endometrial (grade 1) cancer as it’s not an aggressive type. Plus, I only have one kidney now, so the Royal Marsden suggested that I try Megace since my ER Assay showed that I was oestrogen receptive.

Since I was a little bit overweight to start with, I was warned about the weight gain as it’s given to advanced cancer patients and anorexics to stimulate their appetites. I initially had a very good response with the drug as the inoperable mass in my pelvis started to shrink. However, whilst I was taking the medication, I gained 3 stone. I used to find myself in the kitchen at 2am eating anything I could find. It got to the stage that I was even eating dry weetabix, which I don’t really recommend as you just choke on it!!

In November 2020, my routine PET scan showed that the Megace was no longer working. I imagine this was partly due to the weight gain. The Royal Marsden suggested I try another hormone inhibitor and I’ve been taking Anastrozole since January 2021. Unfortunately this had no affect at all and my cancerous mass has started to grow. They also recommended taking Letrozole but I rejected that drug as it can affect your kidneys and since I only have one, that was a big no no from me.

Just to give you some hope, I’ve managed to lose the 3 stone that I put on whilst taking Megace. It’s been a hard 6 months but I’m getting there. I was diagnosed with type 2 diabetes too due to the weight gain, so I’m hoping that the weight loss will help with that.

I hope your appt with your GP goes well and provides you with some reassurance. I wish you all the luck in the world with your future treatment. Take care,

Liz x

Hi Liz. Thank you for sharing your experiences with me, I really appreciate it. The Megace effects seem very similar to what I'm going through. It's good you mentioned about losing weight after coming off the tablets, that has given me hope in dealing with this double edged sword. It was interesting too about the Chemo not being so effective in low grade cases, I really don't want to go down that road. It seems a hysterectomy is the only option and answer. So my goal is to get there. I think I'll go on a Weetabix diet.....with milk. Take care and best of luck to you too. Thanks again for your reply. xx

UPDATE August 2021: Been off the Megestrol since 5th July and almost straight away I noticed my appetite changed, didn't feel hungry or had the need to pile my plate up. Also, my blood glucose is now heading towards normal levels and my legs & feet swelling has gone down. Downside to coming off Megestrol: I started bleeding 'spills' which for one episode went on for 17 days. I called my Oncologist who suggested to monitor it and if it went on for much longer to get some Tranexamic Acid pills from my GP to stop the bleeding. Thankfully it has now stopped by itself (and since I started taking Liquid Iron supplement, coincidence?). Haven't gone back on Megestrol anyway. Just a bit worried I'm not having any treatment now. It feels like a two horse race! 

UPDATE October 2022: Finally a decision has been made to have a hysterectomy after two and a bit years of waiting. The weight loss plan didn't really work (had to wait 10 months for a first weight management appointment which was useless anyway). My Oncologist says after all this time the surgery should now go ahead even with the risks. Thankfully recent CT scans show no signs of spread or growth so I feel I've been lucky. Had the anaethetist meeting last week, now just waiting for the pre-op assessment and surgery date. My diabetes is under control with a lot of tablets and a small insulin dose per day. I think I'll have a hard time with the recovery afterwards with me being overweight, getting in and out of a bed and chair etc but I just want to get this over with so I can stop thinking about it and hopefully in time re-start my life again. Louise x

Hi F4Fruitcake. Golly, that's got to be a record wait so thank goodness you're finally on the home stretch and further good news there's no spread or growth!

You might find this link useful if you haven't already seen it: what to take in my overnight bag .

Sending hugs, Barb xx

Hi Louise, I’ve just been reading your post and so glad you’re booked in for surgery!

I’m a larger lady myself though I am quite fit, I walk an hour a day and try to keep active in general.  My BMI is 47

I had my surgery 3 weeks ago and I’m doing really well. Trying to walk as much as possible.

it will help if you try to build your fitness now, short walks every day and build it up.

Good luck and keep us updated!

Alex x