My sister is sick in Paris

Hi Gesina , so sorry to hear about your sister and the circumstances she and the family find themselves in.

First, one day in a blood cancer journey would not make any difference. I was diagnosed with a different type of blood cancer back in 1999, eventually becoming aggressive in mid 2013 abd although we knew we had to move to treat - It was more important to be in the best condition to have treatment and the correct treatment plan to be put in place.

In fact that wait was about 2 months before treatment started but the outcomes were very successful so take a breath and trust in her clinical team.

Its always good to talk and the Macmillan Support Services provides lots of information, support or just a listing ear.

The service is open every day 8am to 8pm and it's free to call on 0808 808 00 00 have a look by Clicking here for more information.

You can also email them, use the online chat and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

Always around to help out or just to listen.

Thankyou so much for replying so quickly. I guess we were all set for her to start getting chemo today.  Everything has moved so fast since she was admitted last Friday that every single examination/test/ etc is petrifying us. All the more made worse by the fact that we can’t be with her. I think I had convinced myself that she would start chemo. Reading that AML progesses so fast, it is nerve racking for treatment to begin. 

She does need to be able to ‘take’ the treatment so her team will have taken everything into account before delaying a day or so.

Its good that her team are ‘on it’ this is encouraging and let’s look for positive progress to made ASAP.

Have you been able to make contact using FaceTime just to connect although virtually.

Yes, we try and speak to her once a day. Spoke to her earlier, she was extremely exhausted and emotional. She had been holding up so well. So I guess seeing her like that made it worse. They moved her drip to her chest, given the infected arm and apparently they need to make sure that is set up properly too before giving Chemo. 
tonight she said she was feeling calmer again and asked not to facetime so she wouldn’t get emotional. Totally understandable. 
thankyou so much for taking the time to share encouragement. 

Hello Neliz,  back in 2014 I was taken to hospital in Poitiers and can only say the treatment and care I had during my AML and BMT journey was brilliant. I can't speak for Paris but I am sure the doctors will work on the same protocol and take every precaution to get your sister into remission within the coming weeks or months. In France there is a cancer support team (different to Macmillian), If you dont speak the language the hospital will provide translators for you but in my experience most of the doctors and some nurses will speak English. Infections are common and they will get her on antibiotics if they haven't already.

You dont say what type of AML your sister has but please ask the doctors they will explain if you ask. 

Panic is a natural response but speaking to her care team should hopefully put your mind to rest (as much as it can be).

regards

Jackie

So my sister started on chemo last night, which was the 1st of 7 days. Her husband had a meeting with her doctor ( the head of that department) and he said it will be 7 days of chemo and then 3-4 weeks observation, for which she will remain in hospital , because of the risk of infection. He said that phase was critical. They are awaiting tests to see whether a bone marrow transplant is needed, probably very likely.

After initially being elated that her treatment has begun, I am back in a spiral of despair and fear. I know I need to snap out of it, but it is incredibly difficult. 

First a virtual ((hug))

Good that treatment has started and her husband is getting clear information from her team..... this actually helps a lot.

It is hard to get your head round her being in hospital for so long to but trust me, in normal circumstances this would happen anyway, but these are not normal circumstances.

Bone Marrow Transplant is a life changer and as you see Jackie has had one and I had to have two BMTs for my rare CTCL

You may find this confusing but BMTs are commonly called Stem Cell Transplants now but Consultant still tend to use the term BMT.

This is most likely what they are aiming for and let’s look for the treatment to get her into a position of going forward for SCT.

Should she be on the SCT road we do have a dedicated Stem cell transplant support group.

SCT is a rather unique rollercoaster treatment so talking with others who have walked the walk will help a lot..... but the focus at the moment is the now and tomorrow and the next day.

Hi Nellz 

I was diagnosed very suddenly with AML in April 2018 and the initial shock was hard to bear especially for my close family. 
Due to recurrent infections my chemotherapy did not start for three weeks.I responded well and they decided not to go for transplant ,however there were signs of relapse in February 2019 and I ended up having a transplant and am now leading an almost normal life.I do however know of another lady in her 60s who had chemo only and is fine now without transplant.

Hope all goes smoothly for your sister x

Mark

Oh my goodness, that three week wait to start chemo must have been agonising!  The doctors have confirmed today that they would be seeking a bone transplant given certain markers in my sisters bloods, so I will have to give a sample and gather my medical info. They said it is by no means confirmed, given they want to see how she responds to chemo. I guess now hears to keeping fingers crossed that she doesn't get an infection during/after chemo. She will be remaining in hospital for at least 3-4 weeks after chemo to keep her isolated.

I spoke to the MAc Millan Nurse on the care line and that helped so much. My emotions roller coaster a lot throughout the day still, but I guess it has literally only been a week!