Hi everyone. Positive vibes from Consultant, happy with how things are going, no infection showed up on my blood cultures and antibiotics have done their thing in calming my temperature right down. To be honest I feel really good today, though I haven’t felt unwell since before isolation. Only issue I have is that I struggle taking the oral meds.
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Hi @Caroline30 I can feel a celebration coming on.
Oral meds taking can be a problem.
I wonder if anyone can help with their experiences.
Look after yourself and please do keep posting
Yay! 
. This is good news 
. We have been thinking of you 
. Some of those oral meds are like horse tranquillisers huh? Maybe ask if some could be converted to liquid?
But for now, rest up. Great news that there appears to be no infection.
Have a good evening/night and keep us posted.
Sending positive thoughts xx
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Hi everyone. Feeling quite sad today has it is 14 years since I lost my mum and the first one I have had to spend on my own, she passed in this hospital just a few wards down the corridor. Just trying to remember the good times and how her laugh could fill a room. Miss her so much. In the last few days I have had two blood transfusions because of being anemic and platelets which caused slight itching, only time so far but I will see what happens when I have one today. Another antibiotic for 48 hours (Teicoplanin) temperature crept up, different picc line dressing due to skin irritation and today one side of my nose is bleeding. My obs are good, I look well and no obvious sign of any infection.
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Oh @Caroline30 I am so sorry it must have been a really tough, very lonely day for you and also being on treatment is scary and really compounds it.
Also the memories in your hospital.
Be ever so kind to yourself and it sounds as if you have some lovely memories, please do keep posting
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Ahh @Caroline30
What a day for you 
. I am sorry. But get how strong you are focusing on happy memories and laughter. You might not feel strong but I can see it.
My daughter had a reaction to a platelet transfusion (it can happen) so make sure you keep talking to your team so they are aware. Not saying this to worry you but more for awareness.
Do you need anything? I am happy to drop anything at the hospital if you do? We are relatively local.
Anyway, rest up and be kind to yourself this evening. Keep us posted.
Thinking of you
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Hi everyone. Yesterday was horrendous in the fact that I had a nosebleed in one nostril that didnt stop for 9 hours! I think that I possibly caused it though, because I used a migraine nasal sptay in that nostril and it irritated the lining or didnt agree with my other meds. I should have asked the medical team if it was safe to take but at least I have learnt a lesson there. I had no reaction to platelets transfusion this time. @SarahMum thank you for your kind offer of dropping off anything I may need to the hospital but my family are on it. I would like to ask how your daughter is doing? Has she got some of her life back now? Also how are you doing? Xx
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The nose bleed sounds frustrating but I love your positive outlook on it and the learnings. You are so right, this whole process is such a learning curve for you and your family, and I guess in some senses, your medical team as they get to know your personal needs and reactions and how they can best support YOU. Sounds like you are doing a wonderful job!
Your comment about platelets and the learning curve aspect reminded me of when my husband was given some form of anti fungal medicine via IV during the first round. He got increasingly agitated and Said his chest felt a bit funny. I told him to tell the nurses and I popped out to get a coffee. Came back to a nurse shaving his chest and running an ECG behind the curtain but it took a few moments for me to work out what was going on… the lesson for him and his care team was that he may be allergic so for future administration they would apply antihistamine in advance and he’s been fine ever since. We chuckle about it now when we think back to me pulling back the curtain and revealing him being shaved.
Another day ticked off. Hang in there xxx
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@Toadmum I was told that I could have a antihistamine beforehand if it happens again. Glad you can look back on it now and have a laugh. How is your husband doing now? How did you cope with it all? My husband looks so lost whenever he comes to visit and I do worry about him, my daughters are doing thier best by making sure he has cooked meals, clean clothes, house etc. I find the food in hospital really awful most of tbe time but at least I know he is okay.
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Bless your daughters, sounds like they are both really stepping in to help you both.
My husband is doing well now. We’ve had a lot of twists and turns, and just as we get settled into the idea of the next step being route a, things get turned upside down. He has received wonderful care and has now had 5 rounds of chemo. We are about to start another one and then he will go in for his transplant. It was meant to be March but he had an infection and that delayed things and changed the plan to include two extra unexpected chemo cycles.
His strength is recovering and I think he’s keen to get the transplant done now. He has felt quite positive throughout but I know it must have been very hard to spend so much time in hospital since October. We have tried to find creative ways to cope, small ways to appreciate the day and I would say that after the initial shock wore off (perhaps after 6-12 weeks), a lot of this became more normal and it has been easier to adopt Acute myeloid leukaemia (AML) into our life.
I can imagine how your husband is feeling, and I imagine it feels just terrible for him to be at home without you. It took a while for me to get into the swing of a new routine - putting the bins out and adopting extra jobs that I didn’t do before around the house on top of work and our children but he will get there. For me, at first it was little things like no one else being there to put the kettle on and the loneliness and gap was very painful at home each day.
That doesn’t go away but perhaps you do just get used to it more and I hope that your husband will settle and find some practical ways that he can navigate through this. The main thing for me is talking about my worries.
Does he have friends or someone he can talk to? The blood cancer team here might be able to advise some suggestions. For me personally, I talk to family, friends, my husband, but also to Maggies / MacMillan. There are a lot of people that will want to support. I don’t know your situation but at first I did not want to talk to my husband about my worries because it was painful and I didn’t want to scare him. I also couldn’t talk to my children because they are young. Maybe he might not want to share his worries with your daughters but I think that is a really important aspect to being able to get through this.
Whilst I also held back from talking to my husband about my worries, as well as practical things I was worried about, we both felt so much better once we did talk about it. For us this was things like our insurance, bills. How do I do some things that he used to do, just so I could take the load off him. I’ve also learnt my own triggers that make me upset or worried so I try to manage myself accordingly.
For me, I feel more anxious when I know we’re waiting for results or if my husband is neutropenic. I haven’t found a way to remove that anxiety but accepting it and observing it allows me to ask for more help, or take a day off work or whatever I need to do in the moment to try to get through.
Sorry for the long reply. I hope at least one part of it is helpful. It’s such an important topic and I will be thinking of you both.
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Oh @Caroline30 yesterday certainly does sound horrendous and scary for you.
I know I should be used to blood by now, but that red colour is so stark when uncontrollable to me…
Yes, it really is worth checking everything out with your medical team, isn’t it.
Take lots of care of yourself.
Hi @everyone. Today I have had the best news since my admission for cycle 1 of Acute myeloid leukaemia (AML). Consultant has had some of my bone marrow results back from before treatment and it looks at this stage, Iam going to just need chemo and not a transplant. Four cycles, two will be less invasive and he did say mine is a better risk Acute myeloid leukaemia (AML). Final decision though will be after my next biopsy but for now I can see some light in the darkness. Has anyone else only needed chemo? @Suenew1967 I think you went down this route? Does better risk mean a better outcome? Xx
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Heya @Caroline30
This is really good news 
. Celebrate that for today.
My daughter was due to go for stem cell transplant as she has two nasty genetic mutations. However we were thrown a positive curveball after 5 rounds of chemotherapy (one was bridging chemo)
Her MRD test came back negative from Guy’s. Her consultant said she is only the second person in this country to have achieved remission with the horrible mutations she has.
So, they decided not to transplant (It is still there in the back pocket should she relapse) She is now on a targeted tablet therapy for 12 months and will have bone marrow biopsies every 3 months. They all go to Guys in London for the Minimal Residual Test (MRD) This will be for 2 years.
I am sharing this for information really. Please remember that everyone’s cancer (treatment and outcomes) are different.
But for today, I am absolutely made up for you and send love and positivity
Nice One!
Sarah
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Brilliant news @Caroline30yes, as @SarahMum definitely a celebration is in order.
Look at that light at the end of the tunnel today
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Today the consultant told me my bloods look encouraging, my neutrophils are on the way up without the need for platelets, looks like Iam making an early recovery in this cycle and he said must be down to the good genetics I guess, his exact words. Just blood transfusion needed last one was four days ago. He did ask if I have a regular dentist which I don’t, it has been so hard to get one these last few years and I have always used an emergency one if and when needed. How does anyone else deal with lack of dental care?
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Hi @Caroline30 this is a very person reply and not a medical one.
Personally I think it is vital, but I do not see the hygienist if my dentist feels I am keeping my teeth and mouth really well cleaned as personally it can be invasive and I do not want to any infection in my gums.
I had to have multiple extractions in 2006, due to infections, and the specialist private dentist worked with my consultant and GP to give me special antibiotics before, during and after.
I now have top and bottom dentures, which did take a while to get used to, as implants were thought to be too invasive.
Times and thinking might have changed and I stress this is a personal response.
I have not had any fillings since then.
I do let any dentists know my medical conditions and medications.
Good news on your appointment side and celebrate, please do keep posting
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Hi, I’m currently still having treatment for Acute myeloid leukaemia (AML) I had inversion 16 mutation which is good risk and have had 4 rounds of IV chemo as in patient and I’m now on my second course of chemotherapy tablets. The tablets how ever have been worse than the IV so far. After each chemo my body reacted different each time in terms of time it takes to recover. You’ll get through. Having good risk is brilliant news for you and wishing you all the best with your treatment.
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Hi @FaithHinitt A great big welcome to our forum and thanks so much for sharing your experiences to help others on the forum.
I really look forward to hearing more about you.
Look after yourself
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Hope all is going well for you Caroline. Sounds like good news. I’m just home after cycle 2 chemotherapy for Acute myeloid leukaemia (AML) sadly I’m high risk group due to dysplasia so next step will be transplant for me. Biopsy due next week so fingers crossed I’m still in remission and a suitable donor is found. I cannot believe how flat I feel after the second round of chemo despite starting it in a better state. Anyone else any experience of de conditioning? I have an appointment next week with a transplant prehab nurse who will help I’m sure but finding it tough
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Oh @Jilly I am sorry you are finding it so tough, really be very kind to yourself you and your body are going through a lot emotionally, psychologically, medically and practically.
Please do keep posting you have a lot going on, Personally I would say your feelings are very natural it is an emotional rollercoaster you are on.
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