Help! Diagnosed - head is spinning

Hi nbck112

Welcome to the forum although sorry that you have had to find us due to the ALL diagnosis.

I was diagnosed on the 4th of September 2012 aged 42 and like you had just been suffering what turned out to be severe anaemia and my haemoglobin was down at around 4. I had taken myself to A & E with a severe headache and was diagnosed within 12 hours. I was then blue lighted in an ambulance to Barts in London. Then there was the bone marrow biopsy and then the first round of UKALL14 (it was trial then) which was as an inpatient.

I was feeling fine and came home for a couple of  weeks and then was due to do the second round as an outpatient. The first round caught up with me and I ended up staying in for most of the 2nd round as I felt so tired and sick. I did go into remission after the first round though. 

Staying in is boring, but I was allowed some visitors. I felt so rough I just slept most of the time. Once I started to feel better I came out on day 35 of the 2nd round.. My counts were still below 1.0 but I told them I was going home and they worked with me to facilitate it.

I followed the trial, had some bumps on the way but got through it. That was almost 8 years ago now. I had a stem cell transplant in May 2013 and now life is very normal for me. 

Have a look at my profile and it will give you my story of my journey. If you have any questions please feel free to ask away.

Good luck

Hi Paul1969! Thank you so much for replying, I'm so glad you're doing so well after your transplant.

My consultant informed me yesterday I will be an inpatient for the second round and whilst it's not what I want I dont see what else I can do at this point. Hopefully I will only be in for the 28 days it takes to complete the chemotherapy. After that barring serious infection I don't plan on being an inpatient again as even though it's early days my consultant thinks I will go down the chemotherapy route. Don't suppose you have any tips on being an inpatient? 

Thanks

Hi

there is a thread in the stem cell transplant forum which I will find and send you a link to as it has loads of useful tips.

if the hospital doesn’t have WiFi or it is bad.. data.. lots of it! I spent a lot of time just browsing and keeping in touch with family and friends and keeping LG people updated via social maedia will take pressure of your Mum having to died lots of calls. I found I couldn’t read much as the chemo staters to make your concentration bad. Different snacks are good as you may start to lose appetite and find you crave different foods.

i think it is important to take one day at a time.  Each day my challenge was to get up and have a shower. Doesn’t seem much but as the 2nd round progressed it was a challenge some days. Whilst it will be great if you are out in 28 days be prepared for longer. I did 35 days before I discharged myself as neutropenic counts just were stubborn even with the injections to boost them. You may get hit with hair loss if you haven’t already so just see if the ward has clippers if needed.

During round two it was the stage I had a picc line put in so if you haven’t got that or a Hickman that may well happen. If it hasn’t yet don’t resist it!! Makes life so much easier for bloods etc. I wish they had put mine in at the beginning.

i think round two may also include intrathecal chemo. (Into the spinal cavity). Sounds worse than it is but just something new to be aware of.  Doesn’t hurt but feels a bit uncomfortable. 

Everyone’s journey tend to be different but it is possible to get through it and come out the other side and get back to a relatively normal life. It is just going to take time to go through the treatment. When is your next bone marrow aspirate to see if you have made remission after round one?

Paul

https://community.macmillan.org.uk/cancer_experiences/stem_cell_transplants_for_blood_cancers/f/d6a101d9-6dcb-4437-ad00-0445bd965da4/103307/ideas-for-your-checklist

Click on this link for Ideas for your checklist. Some won’t be relevant as it is from the stem cell forum but some useful info.

Paul

Thank you Paul1969, the checklist ideas were very good, my specialist nurse said she think i will go in next Monday so if I do its at least a further week at home. I'm still struggling a little with being an inpatient mainly due to not being allowed visitors but if all goes to plan even if I have to stay a few days extra, your journey has shown me this will be a small part of it and hopefully the rest will be as an outpatient the majority of the time. Atleast this time I am prepared!

The hospital does have wifi but its hit and miss but between wifi and data I did ok the first time. During my stay we will move to a new hospital, I dont know if you have heard of Clatterbridge Cancer Centre but they've just opened a new centre so maybe the wifi and such will be better. 

I did struggle a little with concentration during phase 1 which has since passed but I have seen the schedule for phase 2 in which you receive a form of iv chemo everyday monday to Friday and tablet form everyday with a intrathecal 3 times, so I am worried this one will knock me off my feet, I'm more worried about nausea and mouth ulcers which I don't deal well with at all and I am supposed to be starting my masters Sept 22 but first project inst due until the January so wont start it in hospital if I can't. I do still have some hair although its thinned considerably I started off with extremely thick hair so it still looks ok but I have a feeling its going to go this cycle so I'm going to clip it before I go in the hospital so when I do lose it I'm not alone. 

My counts shot up this time so fingers crossed, it was my liver and kidney function that was a little slow to recover, although they did discharge me before they were back to normal. I've been lucky enough to have a PICC line since before my first chemo as they struggled a lot to find my veins, they havent been using it in the day case wards to get bloods as it gave me a small clot under my arm which has now started to dissolve so they are going back to using it. 

My bone marrow biopsy has been rescheduled twice, was supposed to be Wednesday but was changed to Friday but I'm on blood thinning injections for the clot and my nurse forgot to tell me to stop them and I forgot to ask so mutual mistake, its now Tuesday and I will see my consultant Wednesday. I am no longer neutropenic though so bit of good news. 

Thank you for replying to me it's made me feel better to be able to talk to people who understand.

nbck112 how are you getting on?

Paul

Hi Paul

Pleased to say bone marrow showed less than 1% so my doctor considers me in remission. I commence induction 2 on the 14th as an inpatient, I am hoping this time I'm more prepared and will cope better. I feel like I am largely recovered from my first round so hopefully my body is ready to tackle this round.

I may be wrong but right now I am thinking of this as the last big hurdle and hopefully after this if I'm not for a bone marrow transplant and everything goes to plan the rest of treatment will be a lot of smaller hurdles. 

As I work at the cancer centre now taking over the haematology ward I'll be on I was informed they were going to be allowing visitors this time however now as the number of Covid cases are on the rise again they have unfortunately had to stick to no visitors but hopefully the WIFI will be better in this building for face time. 

So I guess all in all I am just plodding along nicely and trying my hardest to remain positive, thank you for asking! Stay safe!

Hi nbck112

Great news you have got into remission after round 1. I did the same. I am not sure how the treatment differs if you go down the chemo route rather than the SCT route. After round 2 I had round 3 which was as an inpatient and was two lots of 5 days. The chemo in round 3 was OK in its self but unfortunately I reacted to it and ended up with pancreatitis which knocked me of course for a few months. 

Still one step at a time.. good luck with round 2.

Paul

Hi hope your doing okay. My son was diagnosed with ALL Bcell Philadelphia negative last August. He was 25 at the time with diagnosis 4 weeks after graduating from uni. He eventually had the Blinatinub bag end of December to end of January he did well with it...but for him he had to take the stem cell transplant route. Our daughter was the donor.  He had his transplant 14th February and following his May bone marrow biopsy it was nil disease present. Hoping it stays that way. He is still on a fair few tablets and just had his 3rd vaccination as he had to have all his immunisations again.  It will take him up to March when he will be able to start work. If you have anymore hospital stays.  My son found his Amazon fire stick good company!!.....stay safe and well