Mom's gone - so suddenly

Hi All,

I haven’t wrote an update for a while and unfortunately this update is to let you know that my mom passed away on the 18th of July.

The last time I wrote she was doing well on her first course of chemo – for those who don’t know mom was diagnosed with PC on 9th April which had already spread to her liver, lungs and lymph glands. Well mom was receiving the GemCap combination and was on 3 weeks on and 1 week off. After her last lot her and my dad went away for a few days to their usual holiday spot and although they had a lovely time mom started suffering from swollen legs and diarrhea towards the end of the break. This continued but when she went back in to start her second course they gave it to her because everything else looked fine. For the rest of that week she kept saying that she just didn’t feel well but she couldn’t pinpoint why. She was even more tired than usual and the diarrhea didn’t ease off.

Then on the Saturday morning (11th July) her 4th chemo was on the Monday before – she woke up and had trouble breathing. She had gone downstairs to get a drink and couldn’t breathe so she sat at the kitchen table and passed out. When she came round she managed to get upstairs to wake my dad who phoned an ambulance. After lots of tests and x-rays and a scan which she had to wait until Tuesday afternoon for, they concluded that she had a mini heart attack caused by blood clots that had formed on her lungs. They started her on treatment on the Wednesday. On Thursday she had her regular visit with the oncologist who was shocked to find that although they hadn’t given her the chemo IV on Monday she was still taking the chemo tablets – not a good combination with warfarin apparently. So she stopped the chemo tablets right away and they also stopped the warfarin because they said the levels were too high in her blood (after only 2 days of taking it??). She was on oxygen pretty much all the time by then, but we were under the impression that it wasn’t THAT serious as once the other anti-clotting drugs started to work (after a few days) she would feel better and be able to breathe again.

It was my mom’s 52nd birthday on that Thursday (16th) and I had planned, long before she was in hospital, to go over (we live in Holland) with my son as a surprise. We almost didn’t go because I knew my mom would be upset that she couldn’t see us all the time with her being in hospital and us being home, but for some reason at the last minute I changed my mind and we went. On the Thursday night we went to see her and needless to say she was shocked but very happy to see us! We went back the following day with my brother and his son (her only 2 grandchildren) and spent an hour with her in the waiting area (kids aren’t allowed on the ward). On that Friday the last time I saw her alive she seemed a bit better although still really breathless. They had told her they planned to fit a sort of “filter” in her chest to stop more blood clots reaching her lungs or heart (they had found another one in her leg). My dad was with her during the evening visiting and they were constantly tending to her because they couldn’t keep the oxygen levels in her blood stable – but she remained in good humor.

Later that evening the hospital called to say that she had, had a ‘funny turn’ because her blood pressure was low. But they assured us that she was fine and we could call anytime to check on her. Then around 12.45am they called again to say that mom was restless and panicky because her breathing was worse and could my dad come down to sit with her and keep her calm during the night. About half an hour later they called again and the person I spoke to didn’t make much sense, he was asking about my dad (who was literally just arriving) and when I asked how my mom was doing they said she was being attending to by medics. Me and my sister decided to call my brother and go straight down. But they called right back and said those dreaded words – the children have to come right away.

Mom passed away at 1.45am 1 hour after they had said she was fine but restless and 15 minutes before we got to the hospital. Luckily my dad was with her at the end. They told us that she had 2 massive hemorrhages and they couldn’t do anything to save her but that she wasn’t in any pain. This has left us all in a total state of shock; we were unaware of just how ill mom was and absolutely didn’t expect this. Its also left us with lost of questions - like were the bleeds due to too much warfarin or to do with the combination with the chemo tablets?? And were there really no warning signs after a week in hospital and no improvement.

The funeral was last Monday and went perfectly. So many people came to pay their respects and mom had some beautiful flowers. We have also collected almost £500 for our local hospice at moms request. She was such a brave woman and she had got everything in order before she passed – including letters to us and instructions about the funeral etc – right down to the songs she wanted.

I’m so, so glad that I went there and that she got to see my son again. And although right now I just can’t imagine what I’m supposed to do without her (or what tell my 20 month old son when he asks for Nana) I am very glad that she doesn’t have to suffer anymore.

Good luck to everyone that is living this nightmare.

Love Lisa xx

Oh Lisa, I'm so very sorry to read that your Mom has passed. My sincere condolences to you and the family and although it's good to hear that the funeral went as well as it could, I'm sad that it was all so sudden.

As you know, I'm no expert but it would seem that the combination of chemotherapy and warfarin is not recommended. Clearly the following is intended as general advice and the information may not apply in your Mom's case but I think it would be appropriate to contact the medical clinicians responsible for your Mom's care so that you and the rest of the family can get some peace of mind.

A website run by the US National Library of Medicine and the National Institutes of Health starts it's webpage on Capecitabine with the following "Important Warning" in a red box: "When used in combination with anticoagulants ('blood thinners') such as warfarin (Coumadin), capecitabine can cause serious bleeding and death. Tell your doctor if you are taking warfarin or phenprocoumon. Keep all appointments with your doctor and the laboratory. Your doctor will order certain lab tests to check your response to capecitabine. If you experience any unusual bleeding or bruising, call your doctor immediately."

You can read the information at the following website: www.nlm.nih.gov/medlineplus/druginfo/meds/a699003.html

As for Gemcitabine, the following appears on the official side under "side effects": "Low platelet count (thrombocytopenia)

Platelets help your blood clot. A lowered platelet count puts you at more risk for bleeding. Almost half of the patients who received GEMZAR as a single agent experienced some degree of thrombocytopenia. If your healthcare team tells you that you have a low platelet count, you will be asked to take some precautions, including avoiding injury, using stool softeners, using soft-bristle toothbrushes, etc. It is important that you call your healthcare team if you see any signs of bleeding, such as bruising or blood in your stool"

Again, I'll give you the website details so that you can read for yourself if you wish: http://www.gemzar.com/pat/pat240_pancreatic_cancer_side_effects.jsp

I know this probably was the last thing you wanted to hear and I'm so very sorry. I know that you will all support each other but if you need to vent don't forget that we're here. Stay strong.

Love

Nicki xx

Dear Lisa

Please accept my sincere condolences on losing your mum. It must have been an awful shock for you all, especially when you didn't get to see her that one last time. At least your dad was there to comfort her and you will always be so glad that something made you come over to see her when you really hadn't planned to at that time. She saw you and her grandchild, so I hope you can take some comfort from that.

I'm glad the funeral went well, too. Hoping you will get some answers to why things went so off-course in the last hours. Wishing you peace now that your mum is at rest.

Love

Ellie

x

Hi Lisa,

I am so sorry to hear the sad news about your mum. I lost my mum almost 2 months ago, 4 days after my 29th birthday. It is so awful that this cancer is so cruel and causes so much suffering. My mum had only been diagnosed approximately 6 weeks before she died, having suffered complications and low blood pressure following a biopsy procedure.

Although you must be going through so many emotions right now, I know I certainly am, and it will start to sink in now that the funeral is over, try and take some comfort in the fact that your mum is no longer in pain and suffering.

She may no longer be with you in person, but she will always be in your heart and thoughts.

My thoughts and best wishes are with you at this time

Rachel

Hi All,

Thanks so much for your replies it really helps to know that people care and understand how I feel.

Nicki thanks for the information, I have been trying to get in touch with my mom’s specialists and will let you know when I’ve managed to speak to someone.

Thanks Ellie and Rachel for your messages. I’m sorry to hear about your mom Rachel, it must have been a terrible shock for you as it sounds like it was also unexpected?! In my moments of clarity I am very glad that mom is no longer suffering and I know that this has spared her all the horrors that she would surely have had to suffer in the coming weeks/months?

Thanks all, I will be thinking about you!

Love Lisa xx

Hi All,

Just wanted to write an update to let you know that I’ve been in touch with my mom’s specialist nurse and have discussed mom’s illness and the combination of warfarin and capecitabine. Well after speaking with her I’ve discovered that mom was much sicker than we knew but also that this turn of events leading to my mom’s death was also unforeseen by the specialists.

She explained that during mom’s regular visit with the oncologist (the day before she passed away) they discovered some things that indicated that she was deteriorating rapidly. Mom’s CA19-9 levels had gone through the roof – they were just under 12,000 when she was diagnosed and dropped to 10,000 after her first round of chemo but the test the day before she died showed that they had shot upto 30,000!! I can’t find anything to indicate just how big/bad this level is but reading through other posts I can’t find anyone that comes close to this number?

She also told me that blood tests indicated that mom’s liver was not producing the proteins that it should have been to make her blood clot. This is the reason that they stopped the warfarin right away.

Also the cardiologist had put on mom’s file that she was not to have any more chemo because her heart had become weak, due to the extra pressure caused by the clots on her lungs and was at risk of failing.

She said that it does happen (although rare) that a person has “an acute episode” where the cancer just suddenly explodes and takes over the body, it seems this is what happened to mom.

So although she did say that mom SHOULD NOT have been given the warfarin and capecitabine together she said that it might have had only a small impact on the bleed because she had only taken the combination for 2 days. It seems that the fact her liver was not working properly in combination with the other anticoagulants she was taking had a bigger impact.

She told me that they had planned to come up and discuss these findings with mom (and us) and talk about the next steps, but mom died before they had the chance. Even knowing what they knew on that day they did not expect things to happen as quick as they did.

My conclusion from all of this is that; sure someone made a mistake that MAY have contributed to what happened to mom. But taking all the other factors into account then it seems mom had only a very short time left – weeks or maybe even days. Her liver was not working properly, her heart was at risk of failing and the cancer had taken over her body. So we feel that mom passing when and how she did prevented her from the horrors that were probably just days away and also meant that because they hadn’t yet told us all of this it also prevented the fear that this message would have provoked in mom and all of us.

Thanks for listening again!

Take care,

Lisa x

Hi Lisa

Strangely I was thinking about you just yesterday and wondering how you had got on. I'm glad that you've had the chance to speak to your Mom's specialist and that it has given you at least some peace of mind. The difficulty with CA19-9 markers is that there are different ways of calculating and expressing these and you only have to think that liquid can be marked as 25 ml or 2.5 cl or 0.025 l to understand that the numbers of themselves aren't much use without knowing what measurements have been used. However, given the comparison with your Mom's earlier tests, it does seem that the CA19-9 markers were significantly elevated.

My mother's death (some years ago now) was a blessing - she had lung cancer which spread to her brain. The treatment left her with an ulcer which started to bleed but we agreed with the doctors' suggestion that they didn't take any invasive action given the very short time she had left because it would have vastly impacted on her quality of life. It's a very hard decision to have to make and, in a way, I'm glad you and your family didn't have to face that.

There's no such thing as 'good' news in a situation like this but at least you now know that your Mom didn't suffer due to a clinical mistake. It's small comfort, I know, but I hope it helps you all.

Love

Nicki xx