G-Factor a bit like the X-Factor but the only winner is me

I had my first two Growth Factor (G-Factor) injections this morning for some reason they hurt more than the Tinzaparin, not that I think the needle is bigger or wider, but maybe my skin is a bit more sensitive. I had a couple of attempts of jabbing myself on the right side before finally getting it in on my left. I have to have two injections a day to start to increase the bone marrow so that it is forced out of my bones into my blood stream. As the more bone marrow is produced, so will the pain in my joints. So I’m not sure how much pain I will be in by the time Tuesday comes.

I didn’t sleep well again last night, if at all. I got up at about 2am as I couldn’t sleep and watched tv and a film before going back to bed at 6:30. Then I was woken up again by the alarm for Charito to go to work. I’m going to try and get some sleep this afternoon for a few hours as I’m totally shattered.

How it is going

Well after having my intravenous cyclophosphamide (Chemo) on Monday, I seem to be coping ok. I’ve had trouble sleeping and sweating in the night (not sure if that do with the weather as well though). I have had pains in my stomach and feeling cold during the day. I thought maybe it was the weather again, but other people said it wasn’t cold. I kept checking my temperature just in case, but it was fine.

Last night I managed to sleep ok and I feel a bit better today. I had a hospital appointment yesterday to check my bloods and that was all ok. Picked up my prescription for Bonefos from the chemist and have to go the hospital again later on for my Pentamidine which should take about an hour. My next check/appointment at Chester hospital has been arranged for September everything else from now on will be done in Liverpool although they will be arranging for some things to be done in Chester for me, such as the Pentamidine that I have each month.

I start my Growth factor injections tomorrow. I have to inject myself twice simultaneously. This will start to force the marrow out of my bones and into my blood stream. I’ve been told that will be be painful as the process goes on. I will be injecting myself daily until Tuesday when I go back to Liverpool to see if enough bone marrow is in my blood stream to be extracted, if not, then I will keep injecting myself on a daily basis and returning to Liverpool to be monitored until there are enough.

Chemo so far

I didn’t sleep much last night. I was going hot and cold throughout the night I came downstairs and had a little sleep on the sofa during which I got the phone call telling me that I had a new Grandson (an sleep interruption I didn’t mind). So far today I have had a bad stomach, I haven’t been sick, so it seems that the anti-sickness is working. I don’t really feel like eating anything but I did eat a banana before and have been drinking plenty of water. Lets see how the rest of the day goes!

Another Grandchild - Jason

 

I had some good news early this morning – My daughter has had her baby and I now have three Grandsons. Jason was born at 5:25am (I think, i’m sure someone will tell me if i’m wrong) and weighed 7lb 15oz. Jason joins his brothers Kai and Brandon into the Palin Clan.  Congratulation to Amy and Neil and I look forward to seeing everyone soon.  I’m sure they will be smothered with love and kisses if not least by their other Grandparents and Great Granparents.

Monkey hands and Chemo

Yesterday (Sunday) I had to take some tablets in preparation of my Chemo today. Ondansetron which is the anti-sickness and Allopurinol which is to prevent Gout (apparently the other drugs cause this!). I only had to take one tablet of each in the morning. As the day went on the rash started to appear again and my hands swelled up as before so they were all chubby like monkey hands. The rash was all over my Chester as well which confirmed for me that it wasn’t just a bit of sun burn on my arms, which is what I thought at first. I didn’t get much sleep last night as it was so uncomfortable.

I was supposed to take more of the same tablets today before going to the hospital for my Chemo, but I waited until I spoke to Edwina my Bone Marrow Transplant Coordinator at the Royal Liverpool Hospital. I left her a message explaining that I had come out in the rash, which means that the Allopurinol was the culprit last time and I wanted to know if I could skip taking that and also take some antihistamine tablets to reduce the swelling. She called back about 10 minutes later and said that was ok.

I arrived at Liverpool at about 11:45. The staff are just as nice as they are in Chester and in fact they have better facilities, they have a little kitchen area for visitors where they can help themselves to hot drinks – which of course I made good use of.

I had the cannula attached and then had the following drips.

Saline – 5 mins
Mesna – 15 mins
Saline  - 5 mins
Cyclophosphomide – 2 hrs
Saline – 5 mins
Mesna – 15 mins
Saline – 5 mins

I was finally finished and left the hospital at about 4:25pm

I have to take Mesna tablets, which is another anti-sickness 3 and 6 hours after finishing the last mesna so I have to take them at 7:20 and 10:20pm.

Then tomorrow back to the ondansetron.

I feel ok at the moment 6:41pm and will see how it goes later on and tomorrow.

Not quite the start of my transplant

Well today was the start of my stem cell extraction, or so I thought…

We arrived at Liverpool hospital at about ten o’clock. I had all of the paper work I needed from my last visit to get the various blood tests that I needed. So upon arrival we went straight to haematology. They work on a ticket basis – the number on the screen was about 38 so I took my ticket … number 80, the place was full, although there were about 6 staff doing blood tests. My number finally came up (for my blood tests that is) the nurse I had was new and while she was preparing the tubes for the blood, she broke two of them, not a good start. There were six viles that they had to fill with blood as there were a number of test that they have to do in preparation for the transplant. As she was doing the fourth one, she called over another nurse and explained that the needle had come out. The other nurse took over and I had to have the blood taken from the other arm for the rest of the tests. So I finally got my blood tests done at 11am with a plaster on both arms.

I got to my appointment just after 11, it is around the corner at what is called G-Clinic. I was supposed to be there at 10:30 but it wasn’t a problem. We had to wait until about 12:30 before we got in to see the consultant and Edwina the bone marrow coordinator.

They first discussed the possibility of being part of clinical trial called PHANTASTIC (Plerixafor Harvesting And No chemotherapy for Transplantation of Autologous STem cells In Cancer)  This one is real – I really couldn’t make this one up! It is a trial that uses and extraction process that doesn’t use Chemotherapy. However I decided not to take it for two reasons. The first is that I would still need to have high dose chemo during the infusion process and my hair wall fall out during this process. I personally would rather deal with this at home prior to my stay in hospital and dealing with all the other things that have to go with the infusion part of the transplant. The second reason is that with it being a trial  I couldn’t be sure of the side effects and possible long term effects. So for me I’d rather stick with what is known, rather than be part of something very new, at least at the moment anyway.

I only received information about the above in the post a couple of days ago, but during the conversation it became clear that I wasn’t starting the extraction process today. I’m not sure where the confusion came in, but it turns out that I will be starting the process on the 23 May.

The schedule is:

23 May (Sunday) – Commence Allopurinol and Ondanesetron and drink plenty of fluid (at least 2 ltrs of water)

24 May (Monday) -  Chemotherapy (Cyclophosphomide) intravenously along with anti sickness drugs Ondanesetron and Mesna

25 May (Tuesday) - Allopurinol and Ondanesetron and 2 – 3 litres of fluid

26 May (Wednessday)  - Nothing today

27 May (Thursday) – Nothing today

28 May (Friday) – Commence Growth Factor Injections. Two injections a day. The G-Factor along with the Chemo releases the Stem cells into the blood stream.

29 May (Saturday) – G-Factor injections

30 May (Sunday) – G-Factor injections

31 May (Bank holiday Monday) – G-Factor injections

1 June (Tuesday) – Attend Bone Marrow Transplant Unit at 9am for full blood count. If there are enough stem cells released into the blood stream discovered during this test, they will commence the extraction process on this day, otherwise more G-Factor injections will be issued and monitored on a daily basis until the blood contains the correct amount necessary for the extraction. It was explained to me that a good sign of the correct amount being released is the amount of bone pain that I will be feeling. It will be quite painful during the stem cells being released into the blood stream.

The extraction process will involve having two tubes attached, one in each arm. One for the blood to go out in one arm and the other to go in, in the other arm. The blood will pass through a machine and the stem cells extracted and the blood returned to my body. Any surplus stem cells not required for this transplant will be stored for the next time. Hopefully that wont be too soon, but they did say that normally they only manage to get enough for one transplant.

The infusion process to put the stem cells back in again, will commence approximately four weeks after the extraction. Which means I will be in hospital in isolation during the month of June.

One other thing that happened whilst there …. I was collecting the prescription for my injections and anti sickness drugs and discussing the above with Charito and mentioned that I would be in Hospital during the summer in June, when I woman behind me said ‘snap! I will be in for the month of June as well’ – She is in for a stem cell transplant as well. It turns out that she has myeloma as well and she is from Hawrden and attends Chester the same as me. She was diagnosed in September but different symptoms to myself. I had a good chat with her and her husband and it was nice to finally meet someone who has myeloma the same as me.

So although I didn’t start my transplant process today and I have to have the same apprehension and waiting for another couple of weeks I have at least learned a bit more about the process and know exactly what is going to happen. I also have the added benefit of not being in hospital or feeling sick when Amy has her baby, which should be next Thursday. So on the good side I have another couple of weeks of generally feeling ok before a fair few months being unwell.

How I’m feeling

Steven keeps telling me that him visiting each week is good for me. I’m not so sure that coping with him and my treatment is doing me any good!!!

This is a picture that Steven took of me today – Surely this isn’t normal!

Thank you

Just wanted to say thank you again for all the donations so far to Myeloma UK via the ‘Just Giving’ page. They are very much appreciated.

Steven – Wasps – Sickness

Steve came around to the house yesterday, rather than Monday this week. We took a number of photos during the day but decided the best ones were of a dead wasp, so if you are a bit squeamish, look away now!

 

 

The rest of the day seemed to go ok, Charito got home early evening and made us a meal and then we watched a film - ‘The men who stared at goats’. Not long after the film Steven said he wasn’t feeling well, so I offered to take him home, rather than let him ride his bike home.

Steve had told me earlier on that Kai (my Grandson – Amy son) wasn’t well at the weekend and was sick! Whatever it is, I hope it isn’t contagious. When I dropped Steven off at his house and go the bicycle out of the back – he immediately started to be sick. Not a pretty site, I can tell you!!.

Charito is worried that I might catch it (as am I) but I’m hoping it was just a coincidence that Kai and Steven were ill in the same week.  Optimistic maybe! Charito is paranoid about keeping everything clean so I don’t come down with any illness and trying to keep as many germs away. This morning she told me off for sitting in the chair that Steven had sat in as he may have breathed germs on it and she hadn’t cleaned it yet. At least I have a good carer who makes sure that I’m well looked after.