Tue 8th April ‘08:
I booked into a motel opposite the hospital for 8th, 9th and 10th April. A friend drove me to Brisbane and she left me at the motel. Going to bed that night I developed a horrible pain in centre behind breastbone so I took a 10mg temazepam and slept.
Wed 9th April ‘08:
My daughter had booked a flight to arrive Brisbane on 9th early morning - this was SO good. She made make her way from the airport straight to the motel, arriving around 0900.
I had to be in the hospital (in the pic below) at 10.30 and hand in my CT scans so my daughter was able to come with me - it was so good to have this support as I was extremely tired and freaked out by all that was happening and the speed at which it was happening. I was trying to come to terms with what I had become, i.e., my new status as cancer sufferer/victim, and what I was losing, as in my lifestyle and after a horrible illness probably my life. I thought of my hair and losing it along the way. I had always had hair that people envied, long naturally golden hair, slightly wavy - I could always be spotted in a crowd!
My daughter accompanied me back to the hospital at 1145 for an interview with the surgeon. He said the team had already had a meeting to discuss my case and the outcome was that they were not going to operate as they felt that the chemo alone would be sufficient to "cure" this (this was the term he used). My daughter noted his use of the word, as did I. He said that chemo would shrink both the lymph nodes and the tumour and warned me that there would be a significant risk of bowel perforation at the site of the tumour with this treatment. I agreed to take the risk.
He organised both a PET scan for the 11th April and a bone marrow biopsy for the 15th. The bone marrow biopsy was needed to help stage and grade the lymphoma. I was NOT looking forward to that.
Thu 10th April ‘08:
I attended a haematology clinic and t was explained that as lymphoma can spread through the entire lymph system, they needed more tests to determine the current extent of mine before planning an appropriate treatment.
The registrar told me that I had either a large-B-cell follciular lymphoma (slow growing) or the aggressive type, DLBC (Diffuse Large B-Cell) and these are quite different. The original biopsy results suggested DLBC but had been hindered by the degree of ulceration and so they were really not certain which type I had. They were also able to tell me that my jejunum (section of small bowel after the duodenum) both below and above the tumour was clear.
I had only given in my scans the day before but already he had them available on his PC. This system was amazingly efficient!!
He required:
• further blood tests ,
• repeat CT of abdomen plus neck and chest,
• PET results,
• ECG before planning chemo,
• Bone marrow biopsy.
All this was organised literally on the spot and blood taken within 10 mins. Again I was amazed by the efficiency here.
Fri 11th Apr ‘08:
My daughter and I took a taxi to the PET scanner location at 0630. At 0720 I was prepped: line in arm and tube ready to deliver the radioactive glucose when they had it ready. It arrived at 0745 and the nurse shot it in from a heavy lead container. He retired and said as I was now radioactive, I'd be alone for the next 40 mins while my system started to absorb it. He advised that they were doing brain and full body. The scan took 30 mins and after the photos were checked for quality, I was free to go.
In the afternoon the hospital called me and told me that I would be required to stay in Brisbane near the hosp for at least the first 3 chemo sessions and until follow up CTs showed progress, although I may be required to stay until all the chemo was completed. This was going to require a minimum of 7 weeks here - in a motel. I began thinking of the expense. The hospital social worker called me to say there was the possibility that the Leukaemia Foundation would help with accommodation costs and she would pursue that for me. She also gave me an appointment for a chemo awareness clinic.
Steve was due to arrive tomorrow and my daughter was leaving in a few days. Things were falling into place.
Mon 14th April ‘08:
I had a pre-chemo echo cardiogram of the heart and then went to radiology for more CT scans.
Tue 15th April ‘08:
Bone marrow biopsy day. I woke at 0530, made some brekky (fasting from 0630, showered and walked over to the hospital. I consented to donating bone marrow for genome and genetic research, then was prepped with a cannula and taken into another room in my chair which opened up to an op table. I asked the doctor to give me the max sedation she could and she said ok. I was really scared about this as it is supposed to be very painful.
I was given an intravenous sedative plus a skin and bone anaesthetic in my hip. A needle was punched into my hip bone and some bone marrow was aspirated and then they drilled out a 2cm X 2mm bone sample. I was kept in for about 2 hours after, until bp, etc., were all normal and the wound had stopped weeping. Steve took me back to the motel.
Wed 16th April ‘08:
Steve attended the chemo awareness clinic with me as he needed to know what I was going to go through and what side effects I might have. The nurse went through a powerpoint presentation and talked about all the various aspects including side effects. It was very, very frightening. I didn’t know anything the mouth ulceration problem and I became really worried about that and also the inability to have dental treatment, as I knew that I needed a filling.
I accepted that I would lose my hair but I didn’t know that my skin could become rough and dry, scaly, rash or may change colour, nails might change colour, taste change, etc. One's looks are supposed to return eventually but the idea of suddenly looking a lot older was is a horrible prospect. I realised that I would be ugly for at least a year.
Thu 17th April ‘08:
I had a lot of pain after breakfast and in general after eating anything - sharp stabbing pains, quite scary. I had an appointment with a registrar who said:
• the PET scan showed no further activity, RELIEF…
• bone marrow CLEAR but bone sample results still due in,
• bloods good,
• tumour and 3 nodes in same area = stage 2E lymphoma but ungradeable as yet.
There will be a meeting intwo weeks with the state's top lymphoma specialist and they will put up my case. This specialist may be able to grade it. However this won't affect my treatment which will be R-CHOP 14.
The registrar was of the opinion that it was a SLOW growing lymphoma therefore cannot be "cured" only put into remission until relapse. This was bad news for me……… I asked how long these periods of remission lasted but there was no generalisation other than "some people last for years" (unqualified years). The relapse can then be treated.
I had some pain while I was there and she decided to admit me and I was given morphine.
Fri 18th April ‘08:
The doctors arrived at 1215 and Steve, who had also arrived, got questions answered:
1) Is a relapse due to a new B-cell transformation from normal to cancerous?
No, it would be to resistant B-cells remaining. These will have been resistant to CHOP-R so a subsequent chemo would have to use different drugs. These drugs are evolving all the time (like rituximab a few years ago) so there may well be good therapies available in a few years.
2) Where is a new growth likely to occur in the body?
Anywhere at all as B-cells roam freely everywhere in order to do their normal job.
3) How long is the present tumour likely to have been growing?
If follicular, months to a year maybe. If DLBC, much shorter time frame.
They said they would put in a central line (PICC) to deliver the chemo as a central line can last maybe 10 weeks as opposed to having to have cannulas each time and a cannula is no good for drip feeding. I was to be drip fed (nil by mouth for as long as it takes) to stop solids passing over the tumour. They would keep me in hospital for a minimum of 2 weeks as there was a 5 - 10% risk of bowel perforation with this scenario. They envisaged the tumour dissolving so fast after the first chemo that the gut wall might go too and perforate. Scary stuff.
The risk of infection is high with the 14 day cycle as the immune system will not fully recover from one cycle before the next begins. Following a chemo, I should hit the white cell nadir around days 7-11, but would be chemo-ed again on day 14 so I will need injections to boost white cell production.
They said the jejunal lymphoma scenario was rare, even small bowel lymphomas are rare. This might explain the debate about how I was to be fed - there was little precedent to go on so it was a real experimental situation. I would be informed of everything and all the reasons for doing whatever was decided.
A nurse then explained to me all the CHOP-R specific side effects. The drugs are Prednisolone, Rituximab, Doxorubicin, Vincristine, Cyclophosphamide and Neulasta to boost white cells. On top of the normal side effects I risk, from the vincristine, nerve damage which is not always reversible. The doxorubicin can damage the bladder, cause severe constipation...and the list goes on. These drugs are so hard on the artery wall that the central line delivery is necessary so the drugs enter a fast flow and do not maintain contact with the vessel walls.
The PICC was supposed to go in this evening with chemo starting tomorrow but there was no space in the theatre queue for my PICC insertion.
So instead, I needed a cannula in the arm and 2 nurses come to do it. One instructed the other, a trainee, in the process. The trainee was clearly nervous and I suspected it was her first attempt at it. She was clumsy and her fingers were shaking. The other one told her that my veins were near the surface so go at a shallow angle and not deep but she went deep and missed completely then forced the needle on down while the other one said retract it. I yelled in pain as it touched bone (I was thin so this was a reality). She retracted it and the other girl took over and inserted it easily in the other arm. I should say that apart from this, all the nurses were fantastic!! Everyone was!! People can be so kind!!
Sat 19th April ‘08:
No PICC insertion again today but they said they'd give me the chemo anyway via the cannula. The doctors said I was to have nil by mouth for 10 days and I'd be fed by TPN (Total Parenteral Nutrition, i.e., drip fed) for that time. TPN could only go in via PICC which I did not yet have.
0900: MY FIRST CHEMO BEGINS
I took prednisolone tabs and other drugs by mouth. They flushed the cannula that was inserted yesterday but could not get a drawback and decided they could not use this for the chemo so they tried to insert one into the other arm. However, they gave the pre-med (phenergan) via the first cannula despite the lack of drawback. I reacted immediately….dizzy, and my legs jerked spontaneously every minute or so over which I had no control.
They then tried to insert a cannula into the other arm. No good. They hurt me and then called for a doctor to come and do it. In the meantime they decided to give the MabThera monoclonal antibody (rituximab) via the existing cannula.
1015 the MabThera started. It took 4.25 hours to deliver. I dozed most of the time due to the phenergan. All I felt was a metallic taste towards the end of the delivery time.
1415: the chemo nurse started the cytotoxic drugs. There were 3 of these to get:
• Doxorubicin (red colour) went in fast with a flow of saline to dilute it through the vein as it is corrosive.
• Vincristine: a small bag on a drip stand that went in fast.
• Cyclophosphamide: a large bag of this. I got a sore nose towards the end of this.
These took 2 hours in total to deliver so at 1615 the chemo delivery was over with just a saline drip left. I was told to drink loads of water as my liver had to break down a huge amount of toxins and my kidneys had to excrete them. Organ damage can result if one does not drink enough. I drank, and drank.
1810: still no ill effects. I got a "free fluids" dinner (no PICC so no TPN yet) of vitaminised soup, fruit puree, jelly. YUK!
2110: I developed a headache but easily tolerable.
2245: I felt a wave of nausea every 10 mins or so but I didn't vomit.
Here is a full report of an R-CHOP chemotherapy – of the type that I underwent:
The PICC went into a major artery above my heart via my arm so IV drugs were delivered via it:
1) 4 prednisolone tabs to take and 2 painkillers.
2) A phenergan push (I leart the jargon) which is a syringe of phenergan which is a mild sedative but when given like this it caused my tongue to become ineffective so I could not speak clearly and I also had violent muscle spasms. I had to have this before the next drug as it helps mitigate against heart failure which the next one can cause.
Also, in between every drug I had a 10 min saline infusion to flush out the line.
3) An infusion (drip) of Rituximab which, after the first chemo, lasted around 2 hours.
4) Next (connected up by a nurse in goggles, gloves, mask and gown as these chemicals are so toxic) 2 by 40ml syringes of doxorubicin ( a push) that takes about 15 mins.
5) A 100ml bag on vincristine (really nasty stuff made from the periwinkle plant).
6) A 600ml infusion of cyclophosphamide – over an hour.
Then on day 2 after the chemo I needed an injection of Neulasta.........the pain this caused later in the cycle was unbelievable. I had morphine available and other restricted painkillers. I usually had a day of feeling half normal - day 12 to 13 of the cycle and then the next chemo is given as the "14" refers to the cycle - 14 days.
It took between 4 and 5 hours per chemo treatment after the first which took longer as it was my first experience with rituximab. Then I would wait for the chemo-hell to start: nausea, dizziness, headache, very sore guts, backache, rib-ache (severe), constipation, temporary lung damage & coughing, temporary kidney damage, tingling to numb fingers and toes........!!
Here are the drugs and websites to look at the side effects:
MabThera (Rituximab)
Drug type: Rituximab is a monoclonal antibody.
Common side effects:
* Fever and chills
Less common side effects:
* Weakness
* Nausea
* Headache
* Cough
* Runny nose, shortness of breath, sinusitis
* Throat irritation
Rare but serious side effects:
* Heart pain or irregular heartbeats
* Rapid destruction of cancer cells can cause kidney problems.
DoxorubicinDoxorubicin is an anti-cancer (“antineoplastic” or “cytotoxic”) chemotherapy drug and is classified as an “anthracycline antiobiotic".
Initial effects
* Nausea or vomiting
Later Side Effects: (within two weeks after treatment begins)
* Low blood counts
* Mouth sores
* Hair loss
Less common side effects:
* Eyes watering
* Darkening of the nail beds.
* Darkening of skin where previous radiation treatment has been given.
* Problems with fertility – inability to bear children.
Uncommon side effect:
* Interference with the pumping action of the heart which can occur as late as 7 or 8 years after treatments have ended.
Delayed Effects of Doxorubicin:
*Slight risk of developing a blood cancer, e.g., leukemia years later
Vincristine (a neurotoxic plant alkaloid)
Vincristine is an antineoplastic or cytotoxic chemotherapy drug.
It is a plant alkaloid derived from the periwinkle.
Side-effects:
* Hair loss
* Constipation
* Low blood counts
* Abdominal cramps
* Weight loss
* Nausea and vomiting
* Mouth sores
* Diarrhea
* Loss of appetite
* Taste changes
* Peripheral neuropathy: a serious side effect of decreased sensation and paresthesia (numbness and tingling of the hands and feet). Sensory loss, numbness and tingling, and difficulty in walking may last for at least as long as therapy is continued and may wear off very slowly.
Cyclophosphmide
Cyclophosphamide is an antineoplastic or cytotoxic chemotherapy drug classified as an “alkylating agent.”
Common side-effects:
* Low blood counts.
* Hair loss
* Nausea and vomiting
* Poor appetite
* Loss of fertility
* Discoloration of the skin or nails
Less common side effects:
* Diarrhea
* Mouth sores
* Bladder irritation and bleeding
Delayed effects:
* Slight risk of developing a blood cancer such as leukemia or myelodysplasia
Prednislolone
Prednisone is classified as a glucocorticosteroid.
Common side effects:
* Increased appetite
* Irritability
* Difficulty sleeping
* Swelling in your ankles and feet (fluid retention).
* Nausea, take with food.
* Heartburn.
* Muscle weakness.
* Impaired wound healing.
* Increased blood sugar levels
Less common side effects:
* Headaches
* Dizziness
* Mood swings
* Cataracts and bone thinning with long-term use
Neulastsa
Neulasta is a biologic response modifier. It is classified as a colony stimulating factor.
Side effects:
* Pain (bone pain)
* Blood abnormalities (temporary elevation in lactate dehydrogenase)
and to help with the side effects I took:
ordandestone
pramin
spironolactone
frusemide
septrim (antibiotic cover)
iron
calcium
Here is a great website on which you can look up all chemo drugs and much more:
All Chemo Drugs & Side Effects
Sun 20th April ‘08:
0300: I woke with a really nasty headache. My face ached, teeth too, just like a sinus thing happening. Something made me lift my mirror and look in it and my eyes were badly swollen like am allergic reaction, fingers also. I called the nurse was given my morning dose of prednisolone at 0400 to see if that would help. I was still badly swollen at 0700. By 0830 my headache reduced, the nausea and the swelling was going down too.
2000: I had a bad headache again.
Mon 21st April ‘08:
0030: woke with a bad headache.
0600: My headache was really bad and eyes and mouth were terribly swollen. The nurse said she wanted doctors to see this. My eyes looked awful and my conjunctiva was swollen also. I took pictures of myself and transferred them to my laptop so doctors could see even if my eyes went down, as the doctors weren't due for hours.
0800: I realised that my right arm was swollen. I must have been reacting to something but no idea what. I had pain everywhere with a blinding headache and the nurse gave me endone (morphine derivative) to help. I was also very confused and disoriented and scared by this and I was shaking uncontrollably.
0900: I was sent for the central line insertion. I was in agony, disoriented, confused, legs so turgid and swollen that I remembered thinking, in a moment of lucidity, that the skin might burst, and I was also freezing but by the time I got into the theatre (had to wait a good while) the headache was reducing due to the endone and I was becoming steadier. I could think again.
I was strapped (and I mean strapped) onto a scanner bed by a nurse – this was a little frightening in itself - and my left arm was strapped out to the side as we waited for the doctor and I was wired me up to a monitor. My arm was sterilised and green sterile drapes placed round it. The doctor came in and gave me a local which I hardly felt and within about 10 secs he had the line in. They then scanned to ensure it was in the correct place. I really didn’t didn't feel a thing.
When I got back to my room the doctors were there but they couldn't pinpoint what had caused the huge allergic-type reaction. I was to have nil by mouth for the next 10 days, as this was the danger period, so if my gut ruptured I could go straight to theatre. I would be allowed sips of water with which to swallow tablets. They weighed me at 57.7 kgs, WOW, 4.5 kg over normal due to the huge amount of fluids they had been dripping into me (I was 54.4 kg 2 days ago). The TPN drip went up and with it my freedom to drink water. This also meant stabs in my finger tips four times per day to assess blood sugar level.
Tue 22nd Apr ‘08:
I had a bad night as usual - the mattress did not suit me at all. I woke cold and stiff early morning and was due to have bone scan as part of a bone density research project. This took about an hour then back to my room (I was given a private room in the hospital even though I did not ask for one - it was lovely, with an ensuite).
A girl from the Leukaemia Foundation arrived and explained that they had found me a place in their newest accommodation: a 4* "village" opened just months ago at about 15 mins drive from hospital. I so was amazed and delighted that I cried. Here is a pic of the "village" taken from the gate of our unit.
The unit had 2 bedrooms, kitchen, lounge, bathroom, laundry, patio and garden. There was parking and the complex had a library with internet, a gym and BBQs. Steve went with her to see it and took pics for me. Beautiful luxury accommodation FREE (or I pay the gap which was not going to be too much). It would be available tomorrow so Steve could move from the motel.
Due to my extreme backache the doctors wrote me up for an airbed which was really good compared to the normal mattress but extremely cold as there was only a sheet on plastic over cold air. So I spent a VERY cold night.
I took endone and then my PICC line started to bleed. They put an ice-pack on it and I lay with my arm out with the ice-pack to add to my coldness. I had plenty of blankets on top but this did not ameliorate the cold from below. I have a bad and painful night.
Wed 23rd Apr ‘08:
0530: and I was cold and coughing with phlegm rattling in my chest. I weighed in at 58.6kgs!!!!! All fluid. But eyes ok thank goodness. Headache was tolerable. I had a lot of backache - could hardly straighten. I stood by my window and read my book and did some mild leg exercises to try and shift the backache.
I was then given spirolactone (a diuretic) to help remove fluid. I started to pee every 10 mins, then 45 mins. This was good and my back suddenly felt a fair bit more stable.
1800: I get my first anti-neutropaenia drug as an injection in the stomach and I developed a headache so bad I was nearly screaming. It was in my skull, behind my ears and right down my throat. I got a morphine injection in stomach. After 10 mins it started to subside. This was scary!
Thu 24th April ‘08:
I was awake all night with the headache. I had 2 endone, and later 1 endone then vomited for the first time. I suspect the endone caused that. My headache was threatening again but not dreadful. 0900, the doctors came round and puzzled over the headache. I was nauseated by it all day. I took panadol and maxilon for nausea and it was tolerable after that but I was not comfortable.
My weight came down to 55.6 kgs (-3 kgs from 2 days ago). I noted that I was still having pain at the tumour site.
Fri 25th April ‘08:
The headache nasty all day so I could not really do anything except lie in bed. The doctor said he'd put me on clexane injections to help prevent DVT as I was not ambulant enough due to the headache plus backache.
I had had nil by mouth (bar pills), being sustained solely by TPN since 21st April and I was feeling strong hunger pains. Although I was being sustained by the TPN, my stomach was telling my brain that it was empty and needed an input!! I had not reckoned on having to deal with the pain of starvation on top of all the rest of both the physical pain and discomfort and the mental/psychological stuff I had to battle with.
Sat 26th April ‘08:
I woke with huge hunger pangs. My headache was still noticeable down my left side - eye plus ear and down the left side of neck but less than before. I walked around my room pushing my drip which beeped a lot and needed constantly reset. I had a clexane injection, panadol, 2 diuretics, etc., and was very tired. The tumour pain started up and lasted all day, also bone pain and hunger pain.
1600: and my tumour was hurting. A nurse gave me heat packs for my stomach. These helped. 2000 and my tumour started to hurt more with sharp pains every 10 secs or so. It became worse until I told a nurse that I thought something was happening. She gave me two endone tablets and called a doctor who arrived around 2245. He decided to x-ray to see if there was any free gas in my peritoneum (an indication of gut rupture). I was in radiology at midnight and the x-rays showed no gas at all and the endone had reduced the pain so I was taken back to my room.
Mon 28th Apr ‘08:
I had a good night and woke feeling almost human albeit with bad backache plus some general gutache. The doctors came round at 1045 and said I could start food on Wed or Thu. I hoped for Wed as the hunger was getting my spirits down to minus levels.
One does not realise the huge importance food takes in everyday living. It heralds the start of a day, breaks the day into sections, keeps pain at bay, keeps one psychologically comforted….without it a day is a long and painful journey with no start and no end and never any feeling of time or what part of the day it is.
My WBC was count low (the nurse said 0.01) which is very very low. Under 1 is bad but normal with my chemo. My backache lasted all day - also the gutache until I had to ask for endone. 1930 and I felt some relief at last although not much but at least I was able to lie in bed.
Tue 29thApr ‘08:
I woke at 0350 and dozed with bad backache until 0530. Panadol at 0600 helped a bit. My blood count was 0.81 so a dramatic improvement in that. The doctors came round early and said I could start drinking clear fluids tomorrow, then I would have my 2nd Chemo on Fri or Sat so they'd keep me in until that was done.
I had tumour pain all day although my back was reasonable. I began to realise that the excruciating backache (on top of my normal lumbar pain) and the general gutache was due to the injections to increase production of WBCs. They had told me that I could experience bone ache but talking to other people confirmed that some do experience what I was going through.
Wed 30thApr ‘08:
The doctors said I could eat food for lunch and see how well I tolerated it and if ok, I could go to the new accommodation, i.e., get out of hospital!! I gobbled two yukky sandwiches for lunch - I couldn't really taste what was in them. I had no problems though and went to the leukaemia village around 5pm.
I made tuna sandwiches with tomato, scallions and Miracle Whip. This seemed to strip the surface of my tongue a bit. I was amazed at the odd feeling in my mouth and on my tongue - really horrible! And the odd taste – I had never tasted tuna like that before. Steve said it tasted normal so I twigged that maybe this was taste aberration due to chemo. I tasted other food and realised that everything tasted odd and some things just had no taste and felt weird also, not like food but like eating something not designed to be eaten. Like soft cardboard or putty, etc. I was devastated because I was so hungry and my mouth craved a lovely taste but food only removed the hunger leaving me unsatisfied mouth-wise. Oh well, I knew this would not last for ever.
Thu 1st May ‘08:
I ate quite a bit of normal food then I started to have bad stomach cramps. These became excruciating and I sat on the loo for hours. I took endone and eventually passed solids. This continued for a few hours then settled and I felt a lot better.
Tomorrow I will have my second chemotherapy.
