My Blog

December 4, 2007

TUE 4 DEC 2007

Day 120 / 216 days left By Lynz

After a sleepy start to this week things improved and I felt more like my old self.  I am hoping that means my bloods have improved.  I still haven't received by blood test results from the 26th and can't get hold of Dr Sree's secretary until Thursday.... I might just leave it and get two lots of results of Dr Sree on the 11th when I visit his clinic again.

We went and did a bit of christmas shopping on Sunday morning.  I wore my new long black coat - which turned out to be so heavy it made my shoulders ache painfully - what a wimp I am!  It wasn't too busy which was good, because I don't like a lot of people around me (germs and claustrophobia!!)  We had a bowl of soup for lunch in the veggie cafe,  a pot of nice tea and home again.

Yesterday I had my hair trimmed and some highlights put in.  I had to tell my hairdresser not to worry if a clump of hair fell out.  Bless, I think it is probably part of a hairdressers job to hear these stories, so she wasn't fazed at all.  I wasn't sure whether to have a shorter style or not, but in the end its just the same but a bit shorter. 

Later today is #18, 30 more shots to go. 

I bought a "Health & Beauty" magazine this week (it used to be my favourite mag) I'm either very, very optimistic or feeling alot better!

December 9, 2007

SUN 9 DEC 2007

Day 125 / 211 left By Lynz

It has been another unevenful week really, I am pleased to say.... tired and sleepy on the Wednesday, bit grumpy on the Thursday and managing to work Friday.  Monday, Tuesday and Friday have become my work days and it helps alot that I can do this.

Ongoing, regular sx's I have at the moment are, painful mouth ulcers, a sore and often bleeding nose, a constant ache across the top of my back and a shooting pain that goes into my head (I really wish I could get rid of this one!) sore and itchy eyes, my hearing isn't 100% as my head feels like its under water alot of the time, my good and bad gut bacteria play havoc with each other with the baddie winning most of the time, aches in my hip bones, constant thirst, breathlessness, tiredness, hair slowly falling out, not to mention painful piles (can't spell the posh word beginning with 'h'!!)  nausea, brain fog and no tolerance to the cold weather.

Alot of people say that the hair loss issue is the worst side effect and I have to admit this does give me bad dreams sometimes, but by far the worst sx for me is the lack of energy and bodily weakness that results in my not being able to do pastimes that I would like to do. 

I have just finished reading "A thousand splendid suns" by Khaled Houssini (brilliant, highly recommended) so I might try doing a jigsaw puzzle for a change (Can you still get them from the library?  My Mum used to do that!) and I still have the da vinci code on the go.  I feel I could read some Enid Blyton "Secret Seven" or "Famous Five" or "Mallory Towers" or "The Naughtiest Girl in the School"  Lovely books from my childhood.

Two more working weeks to go and then we are closing down for christmas for two weeks.  I'm really looking forward to the break and am sure Estee is. 

December 12, 2007

WED 12 DEC 2007

Day 128 / Only 208 days left By Lynz

I had my bloods taken on Monday and I saw Dr Sree yesterday.  There is very little change in any of my results, the neuts continue to be the biggest problem as they are very low at .56 (normal range is 2.0-7.5) so there is still a high risk of me catching fungal or bacterial infections so I am doing my best to stay away from germy people.  My meds are to stay the same for another four weeks - until my next clinic appointment - and then he will review me again.  In order for me to have the best chance of clearing this virus I should be on full meds for the full 48 weeks, and I am presently only on half dose so he wants me to think about having a blood transfusion and also a daily injection of filgrastim, done at the hospital at the same time each day for a week.  This will give my blood a boost and enable me to go on full meds, all being well.  The Filgrastim does come with its own set of side effects of course, one being blood clots.  I have got to study it a bit more and let him know what I think at my next appointment in January.  Food for thought....

After the appointment Lee and I went into town and did some shopping, had a spot of lunch and then came home.  We walked the full length of the high street and half way back again and I was pleased with how I coped with it.  Thanks to Lee for taking me and looking after me xx

I feel tired today, but not too bad and have managed to be in the office all day - had no choice because Estee had to go and meet a client. At least I managed to stay awake!

December 14, 2007

FRI 14 DEC 2007

Day 130 / 206 days left By Lynz

Medical Notes on Filgrastim/Neupogen

 

Why is this medication prescribed?   Return to top

Filgrastim is used to decrease the chance of infection in people who have certain types of cancer and are receiving chemotherapy medications that may decrease the number of neutrophils (a type of blood cell needed to fight infection), in people who are undergoing bone marrow transplants, and in people who have severe chronic neutropenia (condition in which there are a low number of neutrophils in the blood). Filgrastim is also used to prepare the blood for leukapheresis (a treatment in which certain blood cells are removed from the body and then returned to the body following chemotherapy). Filgrastim is in a class of medications called colony-stimulating factors. It works by helping the body make more neutrophils.

How should this medicine be used?   Return to top

Filgrastim comes as a solution (liquid) to inject under the skin or into a vein. It is usually given once a day, but may be given twice a day when it is used to treat severe chronic neutropenia. The length of your treatment depends on the condition that you have and how well your body responds to the medication. If you are using filgrastim to decrease the risk of infection during chemotherapy, you will receive your first dose of filgrastim at least 24 hours after you receive a dose of chemotherapy, and will continue to receive the medication every day for up to 2 weeks. If you are using filgrastim to decrease the risk of infection during a bone marrow transplant, you will receive the medication at least 24 hours after you receive chemotherapy and at least 24 hours after the bone marrow is infused. If you are using filgrastim to prepare your blood for leukapheresis, you will receive your first dose of filgrastim at least 4 days before the first leukapheresis and will continue to receive the medication until the last leukapheresis. If you are using filgrastim to treat severe chronic neutropenia, you may need to use the medication for a long period of time.

Filgrastim may be given to you by a nurse or other healthcare provider, or you may be told to inject the medication at home. If you will be injecting filgrastim at home, inject the medication at about the same time every day. Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand. Use filgrastim exactly as directed. Do not use more or less of it or use it more often than prescribed by your doctor.

If you will be injecting filgrastim yourself, a health care provider will show you how to inject the medication. Be sure that you understand these directions. Ask your health care provider if you have any questions about where on your body you should inject filgrastim, how to give the injection, what type of syringe to use, or how to dispose of used needles and syringes after you inject the medication.

Your doctor may start you on a low dose of filgrastim and gradually increase your dose. Your doctor may also decrease your dose, depending on how your body reacts to the medication.

If you are using filgrastim to treat severe chronic neutropenia, you should know that filgrastim will control your condition but will not cure it. Continue to take filgrastim even if you feel well. Do not stop taking filgrastim without talking to your doctor.

Ask your pharmacist or doctor for a copy of the manufacturer's information for the patient.

Other uses for this medicine   Return to top

Filgrastim is also used to decrease the chance of infection in people who have human immunodeficiency virus (HIV) or people who are taking certain medications that decrease the number of neutrophils. Talk to your doctor about the risks of using this medication for your condition.

This medication may be prescribed for other uses; ask your doctor or pharmacist for more information.

What special precautions should I follow?   Return to top

Before using filgrastim,

• tell your doctor and pharmacist if you are allergic to filgrastim, pegfilgrastim (Neulasta), medications made from E. coli bacteria, or any other medications. Ask your pharmacist if you do not know if a medication you are allergic to is made from E. coli bacteria. Also tell your doctor if you or the person who will be injecting filgrastim for you is allergic to latex.
• tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking or plan to take. Be sure to mention lithium (Eskalith, Lithobid). Your doctor may need to change the doses of your medications or monitor you carefully for side effects.
• tell your doctor if you are being treated with radiation therapy and if you have or have ever had chronic myeloid leukemia (a slowly progressing disease in which too many white blood cells are made in the bone marrow), myelodysplasia (problems with bone marrow cells that may develop into leukemia), or an enlarged spleen (an organ located under the ribs that is needed to clean the blood and fight infection).
• tell your doctor if you have sickle cell disease (a blood disease that may cause painful crises, a low number of red blood cells, infection, and damage to the internal organs). If you have sickle cell disease, you may be more likely to have a crisis during your treatment with filgrastim. Drink plenty of fluids during your treatment with filgrastim and call your doctor right away if you have a sickle cell crisis during your treatment.
• tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. If you become pregnant while using filgrastim, call your doctor.
• if you are having surgery, including dental surgery, tell the doctor or dentist that you are using filgrastim.
• you should know that filgrastim decreases the risk of infection, but does not prevent all infections that may develop during or after chemotherapy. Call your doctor if you develop signs of infection such as fever; chills; rash; sore throat; diarrhea; or redness, swelling, or pain around a cut or sore.

What special dietary instructions should I follow?   Return to top

Unless your doctor tells you otherwise, continue your normal diet.

What should I do if I forget a dose?   Return to top

If you will be injecting filgrastim at home, talk to your doctor about what you should do if you forget to inject the medication on schedule.

What side effects can this medication cause?   Return to top

Filgrastim may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

• redness, swelling, bruising, itching or a lump in the place where the medication was injected
• bone, joint, or muscle pain
• headache
• nosebleeds

Some side effects can be serious. If you experience any of these symptoms, call your doctor immediately:

• pain in the left upper part of the stomach or the tip of the left shoulder
• fever
• shortness of breath
• trouble breathing
• fast breathing
• wheezing
• dizziness
• sweating
• hives
• rash
• itching
• swelling around the mouth or eyes
• unusual bruising or purple markings under the skin

Some people who used filgrastim to treat severe chronic neutropenia developed leukemia (cancer that starts in the bone marrow) or changes in the bone marrow cells that show that leukemia may develop in the future. People who have severe chronic neutropenia may develop leukemia even if they do not use filgrastim. There is not enough information to tell if filgrastim increases the chance that people with severe chronic neutropenia will develop leukemia. Talk to your doctor about the risks of using this medication.

Filgrastim may cause other side effects. Call your doctor if you have any unusual problems while using this medication.

 

Am sure they make it sound worse than it actually is!

December 18, 2007

TUE 18 DEC 2007

Day 134 / 202 left to go By Lynz

I enjoyed my shopping trip on Day 128 so much I tried to do it again on Saturday, Day 131.  I felt fine while I was out and about but tiredness caught up with me later on and I had to go to bed at 6.30pm.  Did nothing on Sunday and went to bed at 6.30pm again.  Yesterday felt like a Wednesday but worse because I didn't even feel like reading, felt dizzy and light-headedand another early night.  Today I do feel more like my old self..... just in time for shot 20 tonight! (The next nought will be 30 and then 40, yahoo)  That is the first time I have felt so rotten and it has been my own fault.  Now I know my limitations!

I had my hair cut short this morning and layered, hope I have done the right thing (in terms of how much more I might lose!).  I was fed up of not being able to dry it myself and it flopping around my face.  I'll reserve judgement until I get up in the morning and have to deal with it myself.... hence the photo below (apologies for almost dwarfing the tree)!

 

A very Merry Christmas to you all!

 

 

 

December 27, 2007

THU 27 DEC 2007

Day 143 / 193 more days to go By Lynz

Hope everybody has had a super christmas, we have here.  Slightly different to that which was planned.  My in-laws were not well enough to travel on christmas day so for the first time ever there was only two of us.  Estee did us proud with the cooking.  Then we did the traditional thing and listened to the Queen's speech.  It was all very leisurely and very nice.  Boxing Day, Lee, hubs and the grandchildren came over.  We were going to talk to Dee in Dubai via the webcam but that didn't quite work out either!  So we rang her up instead!  Somewhere in my blog I have mentioned jigsaws - so Lee duly got me one for chrissi.  It is an arial scene of our house and the village we live in, so lots of green and lots of bricks, won't be easy! 

I had my 21st jab a bit later than normal on christmas day and managed to stay up until almost 9pm.  Just lately my bad day has been a Thursday instead of the Wednesday, so I was fine when Lee and everyone was here.  Am having a quiet day today though. 

The balance of days (above) is slowly changing - we are almost half way now.  Sometimes I still can't quite believe that I'm going though this awful treatment for a serious disease I never knew I had until six months ago.  Sx's are much the same as reported a couple of weeks ago with the addition of some mild chest pain.  It doesn't really bother me - it feels  like a weight on my chest that I want to rub, but it doesn't go away.  I will have to check it out with the doctor when I go on 8th January.  I've probably got a mince pie lodged there, lol! 

December 28, 2007

FRI 28 DEC 2007

Day 144 / 192 more to go By Lynz

I've been struck down with a lergy... yesterday I couldn't stop sneezing and spent most of the day sleeping and resting.  I had a headache, my body ached and I felt generally very unwell.  My chest feels a bit better though, so that's good news.  My family arn't germy people, they are all healthy at the moment so I'm blaming someone in waitrose when I did my food shopping last sunday.  It's too early today to say how I feel and I'm going back to bed in a minute.  Maybe when I wake up it will have gone!  Estee is gonna get me some oranges for the vit c and I shall have a fruit smoothie later this morning.