Piia Pauliina
  • scissors
    May 27th, 2010

    I had my PET scan on Tuesday at the Sutton branch of the Royal Marsden.  I also had some blood tests for the stem cell harvesting at their out patients unit.  I met Joy Brennan who will be my specialist nurse contact whilst a patient there, which means, once this stem cells transplant kicks off, I will no longer be a patient at the Chelsea branch.

    They also assessed my veins on Tuesday, as they will need to have two points of access for the stem cell harvesting.  To no surprise, my veins are rubbish, and I will need a new central line put in as apparently they cannot use my beloved PICC line for the harvesting.  I am going to get a ‘tunnelled central line’ also known as the ‘central venous catheter’ (please see the pic below).  The central line is placed under the skin in my chest into a vein close to my heart.  It takes about an hour to fit the central line and it is usually fitted under local anaesthesia.  This completely blocks feeling in the skin at the entry site (usually close to the collarbone) and at the exit site (usually in the upper chest area).  The entry site is where the line is inserted and the exit site is where one end of the line sits outside the body. I will stay awake during the procedure.  I may be given a sedative to help to relax.  The PICC will be taken out.  It will be strange not to have it anymore.  I have had it for so long, nine months or so.

    I have been ever so nervous about the PET scan results.  They had the meeting this morning and my doctor called me straight back.  I do not have a full remission; there is still a small area of active cancer at my chest where the original mass was.  However, it is so small that they have decided to go ahead with the stem cell transplant and high dose chemo.  So, no more PMitCEBO!

    I am a little disappointed that the cancer is still lingering there, but I am excited that things are finally moving on.  I trust their decision of going ahead with the high dose chemo.

    Everything has to move swiftly now as we know my cancer is aggressive and will grow again if no chemo is administered.

    I have a busy schedule ahead.  On Tuesday I will meet Dr Mark Ethell again followed by more blood tests and an ECG check up for the central line.  On Thursday I will have the central line put in.  Friday I will have the chemo drug Cyclophosphomide prime that will hopefully bring the stem cells out the bone marrow into the blood stream for harvesting.

    Then on Sunday I will take a train to Bristol for my 5-day retreat at the Penny Brohn centre, which I am really excited about.  The 3-day course in January made such a difference to my mood.  In there, I will start the GCSF boosters in aid to bring loads of stem cells into my blood stream.

    Monday the 14th they will check my bloods, particularly a molecule CD34 which quantifies stem cells.  If the count is adequate, I will go ahead with the stem cell collection.  If it is not, I have to go home to do my booster and return next day in hope the counts are high enough.  If they are not high enough by Wednesday, the stem cell harvesting has failed.  And, they have to look at other options.  Let’s hope my body will produce loads of this CD34!

    I will have to travel to Sutton a lot, which is a 2 to 2 and a half hour journey (one-way).  Sadly, all my appointments start at about 8-8.30am.  Loads of early mornings for me!  They suggested booking in a B&B near by, but that is not viable since I am on benefits, I do not have that kind of money.

    It is not quite clear yet exactly when I will be admitted in for the actual high dose chemo and the stem cell transplant.  It will either be the 23rd or the 30th.  I should find out later today.

    Tunnelled Central Line

  • scissors
    May 24th, 2010

    I had ‘zillion’ white blood cells and neutrophils today (thanks to the boosting), so the 4B PMitCEBO went ahead today.  They gave me half the dose of the Methotrexate (one of the chemo drugs) as this apparently caused the mouth ulcers last time.  Hopefully, I will not get them this time.

    It was weird not to book my next chemo, as everything now depends on my PET scan results, which I will find out on Thursday.  I am slightly nervous of the outcome.  Obviously, my dream would be to hear the cancer is gone…  However, I may need to go back to more PMitCEBO next week.

    Fingers and toes crossed for some good results!

  • scissors
    May 19th, 2010

    I had my meeting with Dr Mark Ethell, the stem cell consultant at the Royal Marsden Sutton branch on Monday.  He just wanted to have a catch up with me and see me in person.  On paper I may have sounded like a disaster case with my recent renal failures, chest infections and low neutrophil counts, but actually I do not look ill at all when you see me in person.  One of the specialist nurses there commented that there is no way I have had that much chemo, to her I looked liked I had not had any!  And, all the nursing staff could not get over the fact that I was wearing a wig.  They all thought it was my own hair.  One of the nurses had worked there since 1975, and said she had never seen as good wig like mine before!  And, I am sure she has seen a fair share of wigs during her career.

    Mark was talking to me about the plan when the harvesting and the high dose chemo may happen, all of which is totally dependent on the PET scan this Tuesday.  So, I will not go into details as it may all change next week.  I will know more after the scan has been in discussed at the Multidisciplinary Meeting (MDT) on Thursday next week.  But, it looks like the earliest I would be admitted in for the high dose chemo would be around the end of June.  We will see.

    I had my blood counts checked on Monday, and unsurprisingly I was neutropenic!  Mark suggested injecting a booster that day, as I was scheduled for the 4B PMitCEBO next day.  My neutrophils count was 0.5, which is the cut off point for me to have the chemo.  Any lower, they would not go ahead.

    Sadly the next day at Chelsea, my neutrophil count had dropped to 0.3 and they could not go ahead with 4B PMitCEBO.  I got really frustrated, as this happens EVERYTIME after the A-part.  I asked to the doctor reviewing me that why do not we boost the neutrophils beforehand if we know I will be neutropenic for the B-part??  He was not my usual doctor and he thought it was best if Lucy, my key nurse came to explain this to me.  Lucy said they cannot artificially keep on boosting my neutrophils, and that it is normal for the counts to go low after the A-part, and that I should not worry about these gaps in the treatment.

    I think, I am not so bothered about not having the chemo weekly as planned in the sense of how effective the treatment is, as I am sure a week gap will not make a significant difference.  I am simply frustrated this keeps dragging on, and I cannot see an end to it all.  I feel a bit trapped with all these appointments, treatments, and low neutrophil counts, as I cannot fly to Finland for instance, or go anywhere for more than a couple of days, or make many plans for that matter.  I have been hoping to go to Finland since January, and it is nearly June… And, if my chemo had been going as planned, I would be having the high dose chemo as I type.

    Anyway, I did have Rituximab yesterday, at least.  The 4B PMitCEBO I will have next Monday (blood counts permitting).

  • scissors
    May 16th, 2010

    It is exactly a year ago I woke up with my lymph nodes in my neck swollen, and when this journey started.

    My pillow was covered in loose hair this morning, so I thought it was time to shave my hair off.  Jukka (my ex boyfriend) had lent his hair clippers, so I did I myself.  It was not as traumatic as it was the first time.   Of course, it was a shame I had to do it, and lose my hair, again.  But, I am mostly relieved it is done.  Now I can stop worrying about it.  To be honest, I feel pretty numb about the whole thing.  Frankly, I am getting bored with this cancer business, and losing hair was jus one of those, ‘oh here we go again’.

    I took a picture of my short hair yesterday (please see below).

    My blood counts were good on Friday, so I have not had to boost my white blood cells and neutrophils this weekend.  I am hoping they will check my blood counts at the Sutton tomorrow.  I am still a little sceptical if I will have the part 4B PMitCEBO on Tuesday as planned.  I hope so.  I do not want this to drag on any longer than necessary.

    Me with my short hair 15th May 2010.

    Me with my short hair 15th May 2010.

  • scissors
    May 12th, 2010

    My hair has grown about 2 inches, 5cm, which has been great, as I do not need to wear a wig, hats etc at home!  But, now I think it is starting fall off…  They said, my hair would fall off during this chemo, but as it has not happened, yet, I thought maybe it would not.

    Oh well, it would fall off during the high dose chemo anyway, so I suppose it is not the end of the world.

  • scissors
    May 12th, 2010

    The 4A PMitCEBO went ahead on Monday.  The boosting had worked, and my body was full of white blood cells and neutrophils.  My mouth ulcers were not healed, yet, and still a little painful.  But, the consultant reviewing me thought it was safe to go ahead with the chemo.  I was not looking forward to it, but still happy there were no more delays.

    The chemo was OK, although I had to wait to for my drugs most of the day, and the chemo did not start until about 15.30.  It was a long day.

    I am going to have my blood counts checked again this Friday to see if I am neutropenic or not.

    My next chemo is actually on Tuesday as I am off to the Sutton branch of Royal Marsden to discuss the stem cell transplant this Monday.

    The consultant said that I may only need to 4 cycles of this PMitCEBO.  If so, the Tuesday 4B would be my last one.  I am not putting my money on it…

    The mouth ulcers are getting better every day.  I have not needed pain killers since Sunday evening.  And, I can almost taste food again!

    I have been really tired lately, and falling asleep everywhere, busses, tubes, waiting rooms, sitting by my computer…  And, I sleep like a log during the night!  I am so used to getting very little sleep thanks to the steroids, so all of this is very strange to me.

  • scissors
    May 8th, 2010

    I went to the Royal Marsden to have my blood count checked yesterday, as I expressed my concern of being potentially neutropenic for Monday’s chemo.  I also wanted a doctor to have look at my mouth ulcers as they had been getting worse, and the pain was getting unbearable.

    It was a jolly good job I went, as I was neutropenic, and the advice was to do the boosters for the next three days before chemo.  If I had not gone to the Marsden, my chemo would have most definitely been delayed, again due to low white cell and neutrophil counts!  They have also modified my medication for the mouth, and I got this new oral suspension, called Sucralfate (Antepsin), which seems to sooth the mouth a bit.

    My ulcers are getting better, in my mouth anyway (my throat is still very sore).  Here is what has actually been helping in the end: increase the dose of Fluconazone from 50mg to 200mg; the Sucralfate as mentioned earlier; and combination of paracetamol and Tramadol (for the pain).  A Gelclair, oral rinse gel that I was given on Tuesday was too painful to take.  As was the antiseptic mouthwash I have been using.  Nystatin, an antifungal antibiotic did not make any difference. And Bonjela made me scream of pain when I applied that on my ulcers.  Obviously, I am also taking all my vitamins and trying to eat plenty of fruit and veg.

    Hopefully, my mouth is better by Monday, not only so that I can have the 4A PMitCEBO, but I also want to stop taking high doses of Tramadol, as they are making me feel so drowsy.

  • scissors
    May 5th, 2010

    I am back at home.  Sorry for the late update.  I wrote for my blog on Friday at the hospital, please check that as well.

    Well, I managed to get out of Homerton hospital on Monday afternoon.  I could not have been any happier.  I was beginning to start losing the will to live in that hospital.  One of the first things I noticed when I was at home, how quiet it was.  Hospitals are so noisy, and you simply do not get any rest there.  Which is ridiculous, as when you are poorly, that is when you need the rest the most!  I felt incredibly tired, physically and emotionally when I got home.

    I went to the Royal Marsden yesterday to be reviewed.  My bloods were good.  The kidneys had fully recovered.  However, my mouth is FULL of PAINFUL ulcers, so they did not go ahead with the chemo.  Even though I hate delaying my treatment, I was pleased as I felt I could not take the treatment yesterday.  I felt I was not fully recovered, yet.  I was given medication for my mouth.

    I was still quite traumatised by the Homerton experience yesterday, and kept bursting into tears whenever anyone asked me how I was.  The staff at the medical day unit are so lovely, a total opposite to the staff at the homerton.  I was overwhelmed by the kindness I received yesterday after how I had been treated in Homerton.  The sister in the unit was particularly amazing.  She was on her way to have her lunch, but when she saw me, probably looking quite different from the bright and bubbly person that I normally am, she came and sat down to talk to me.  The unit was extremely busy yesterday, but that did not stop her to spend proper time with me and to listen to me, and comfort me.  She decided to order me a taxi home on the department budget.  In the end, I was crying just because she was so kind, and had made such a massive difference to how was feeling.

    I am at home, catching up with some sleep, and trying to fix this mouth of mine.  I am in a lot of pain, which is constant. I had to opt for tramadol, as paracetamol alone did not seem to make a significant difference.  Eating and drinking is extremely difficult, but I have been trying.  I can mostly only tolerate cold smoothies, which I drink with a straw trying to bypass the mouth as much as possible.  I have lost 2kg of weight already. I really cannot wait to have my mouth back to normal!