New and very unexpected Diagnosis of Lung Cancer

Hi Aquarius 71

The waiting and uncertainty was the worst part for me (and probably for most of us on here) but once you have a diagnosis you will then at least have some direction.

I won't pretend to know about your possible medication but hope there will soon be light at the end of the tunnel. 

Hi Aquarius

I bet that was an awful long week for you.

I am sorry that my variant is not SCLC. 

I am sure of course that there is treatment for it. I will post a link here for you to look at about it. But yes I believe that chemotherapy and sometimes radiotherapy can be used.

lung cancer explained

Good luck for tomorrow, hopefully you will be much more informed about your treatment after that.

Hi meeting went ok. It helped give my husband a better understanding of what was going on and what to expect. I on the other hand am still numb and not getting used to what I've been told I have. 

Its stage 2 sclc he said T2N1M0 so I will be getting chemotherapy and radiation treatment at same time. They discussed my case at MDM and have decided no further tests required just now. I'm seeing oncologist on Tuesday so I am assuming treatment will be starting soon. 

I'm trying to figure out what I need to do to prepare myself for all this 

Thanks x

Hi Aquarius

I am glad you are approaching starting treatment. Yes when you see him you will be told the type of chemotherapy and how many treatments of radiotherapy you should receive and an anticipated start date.

Firstly you will need to get 'marked' for radiotherapy. This is another CT and they put small dots on you to line you up.

If you want I wrote a long post as I had them at the same time with my experience which I have saved. So if anybody else asked I could easily copy and paste it.

I am not surprised it is all taking a while to sink in. Do not worry, it is usual that it will take a while for it all to process. 

If you feel like you need some extra support you can ask your GP for some counselling or support of you could go to your local Macmillan centre or call the helpline here to available every day 8am - 8pm on 0808 808 00 00 

Thank you Gina 

Yes I would really like to see your post about your experience.

I think I will feel a bit more organised in my head after speaking to oncologist 

Xx

I think you will feel more sorted when you do see him. Then you will no what is going to happen and when and you can focusing.

Ok copied below for you. I put what I thought people would expect and what I found were my top tips. Any questions you are welcome to ask.

Cisplatin and Vinorelbine (VP) chemotherapy alongside 33 fractions of radiotherapy

I had this treatment and the below is an outline of my experience so others may know what to expect. I had a middle ground experience of treatment, so hoping it will give a fair view of it for people wondering.

I changed to Carboplatin on cycle 3 so I can give a little info on Cisplatin’s slightly less evil sister too.

Just to give more background, I started both chemotherapy and radiotherapy on the same day. I had 6.5 weeks of radiotherapy Monday to Friday (or Saturday when it was a bank holiday to catch up) alongside 3 cycles of chemotherapy. I have not had any surgery.

Chemotherapy

Practical information

• A cycle is usually based on three weeks. The first day you get both types, the second week just the Vinorelbine and the week after nothing so a break week. Thus, infusions are on day 1 and day 8, nothing on day 15. After 21 days you then go back to day 1 of the next cycle.
• You will have a blood test before you begin and then at the end of each week to check that your blood levels are within range for the next treatment.
• You will be given a 24/7 acute oncology helpline number with examples of when you may need to contact them. I.e. running temperatures, excessive vomiting, constipation lasting 2 – 3 days etc.
• You will likely see your oncologist each week to discuss how you are coping, side effects and any adjustments needed to medication or prescriptions for any side-effects you have.
• You will be told to get a good thermometer to keep an eye on your temperature.
• You will be more prone to infection during treatment and for a month after it is complete so will still need to keep an eye on temperatures during this time.
• You will be given a prescription of anti-sickness and steroids to take over the next 3- 4 days after each infusion. Don’t forget to get this before you leave.

Treatment

Before they start you will be given several tablets to take, this is anti-sickness, steroids and tablets to make you go to the bathroom a lot as the Cisplatin is not to sit in your kidneys as will cause damage. This is super fun with your iv lines all hooked up, and stand and the tiniest bathrooms ever! Trust me, get a seat close to the bathroom, by the time you have paused the infusion, unplugged and untangled and wheeled to the bathroom and maneuvered you and your stand into the cubicle, it will almost be time to want to wee all over again!

Vinorelbine will be given first. The line is put in and flushed. I think they give you a tiny bit of fluids first. The chemotherapy is then given and only takes 10 minutes for the first one. The nurse has to stay with you during this infusion and will ensure that you feel ok whilst this one is going in.

You are then given an hour of fluids through IV to prepare for the Cisplatin (toilet time!).

The Cisplatin infusion takes 2 hours to complete (you may have a nap if you can keep off the loo long enough.

You then get a further hour of fluids after the Cisplatin to ensure it is all flushed through properly.

Because of this do expect cycle 1 day to take about 5 – 6 hours in chemotherapy alone. Take books, knitting, magazines or a friend to keep you company. Each person is usually allowed one person with them. You will be offered hot and cold drinks and sandwiches and snacks etc. Day 8 is very short and quick being as it only takes about 10 minutes to actually give the infusion.

My experience

I started to feel hot and a bit agitated towards the end of the cisplatin infusion, I was beginning to feel sick (suspect the anti-sickness had worn off by now as it took so long). I went to pharmacy to collect the prescription and found myself having to leg it to the nearest bathroom and projectile vomiting quickly ensued. Several throw ups and a lot of sweating later I got my prescription and found my way in the maze to radiotherapy (locating several more toilets on the way to throw up in). – I will pick up from here in the radiotherapy bit.

I felt like I had similar to norovirus for the next three – four days. I spent the rest of the day throwing up and sweating. I got back to the apartment and fell asleep drained despite the steroids. The next day whilst warned that I would be constipated, well let’s just say for me it was the complete opposite and to never trust a fart whilst on chemotherapy! I wasn’t physically sick after the first day, but didn’t feel like eating anything, I think I managed a banana on each of the two days to follow and finally started to feel hungry on the 3^rd day after’s evening. After that back to normal hurrah!

I was also absolutely fine on the second week of the cycle so it had to be all the Cisplatin’s fault.

For cycle two I was given the tablets for anti-sickness via IV before the infusions, they did help in that whilst I was not physically sick (though very close to it) I still felt really nauseous and followed the same sort of eating pattern as the first week. I also had a funny turn on the third day of cycle 2 after radiotherapy. I went to MacMillan on site who called acute oncology as I was pretty unresponsive (weak, sweating and dizzy). They had no room so I was taken to A&E. They gave me such a thorough check over and found that my blood pressure had dropped really low (I have naturally low blood pressure anyway so with the sleeping and not eating I think this just made it drop too low). Lots of water feet higher than my head for an hour or two and I was released back in to society.

Due to this for cycle three I was given Carboplatin on the third cycle and I was fine (didn’t even have the anti-sickness by IV). Whilst Carboplatin is kinder on the stomach it tends to be harsher on the blood counts. I didn’t have the second part of cycle 3 as radiotherapy had finished and I was not tolerating it that well, so they decided to leave it there for me. My blood counts were dropping each week and I suspect they likely would have gone too low for the second part either way.

My Tips

• Get a thermometer
• Keep a sick bowel handy
• Get lots of snacks or easy to make things in for the days following chemotherapy – you may find your appetite comes and goes quickly, so have something ready for when it comes. Though be aware your taste buds may change and what you usually love may not appeal at all.
• Know where the nearest toilet is and get a chemotherapy chair near the door.
• Ensure you speak to your nurses/oncologists about all side effects, they can give things to help and it’s important that they are aware. Some side effects can be serious.

Radiotherapy

Practical information

• Daily sessions take about 20 minutes. Most of this time will be to get your in position. You will then be left (they are watching you on the camera) whilst you have the treatment.
• You will be given a gown to wear.
• You may have a cone scan each day from the machine once put in position, dependent on where your tumour(s) are.
• Your team will ask how you are each day and they are not just being polite. They actually want to know, now is the time to say any concerns/worries/side effects.
• If you are having chemotherapy at the same time, do not worry about missing your radiotherapy appointment time, they will just tell you to go up as soon as you have finished your chemotherapy for the day.
• The machines have a lot of service days and do tend to brake down regularly, expect delays!
• You will likely be given a check – in barcode when you start, so you can scan to say you have arrived.
• You will likely be on the same machine and with the same team each day, so they will get to know you and you them. There about 4 – 6 people on the team usually.
• You will have a CT line up and be tattoed (small dots in a diamond shape one on each side of the ribs one central below your throat and one central near the bottom of your rib cage).
• You will have your photo taken likely at your line up appointment (when you are fully clothe of course) this is to identify you.

Treatment

You will wait to be called to get changed into a gown. I think necklaces have to come off and all top clothing and underwear. You will be asked your date of birth and address each day before they start. You will then be lined up by two to three people (a mixture of men and women). I regularly told them off for their cold hands! They will be calling coordinates to each other. They lift you about 10 feet in the air during this, do not panic they do lower you back down a bit and they really will not let you touch the bit hanging off the ceiling, though they do seem to like to play how close can they get you to it before they stop! Once in position they will not allow you to move and they will leave the room. They played music for me when I was having my treatment as you feel very alone whilst they go and lying still staring at the ceiling is very boring. They may even let you request what music you want (my team let me). If you need to be scanned this is done now. They can see you on the camera and say any problems to wiggle your hands and they will stop and come back. Once the scan is done (the machine rotates round you like during treatment) the red dot light above goes out and then the treatment will start. It is completely painless and for me all I felt was the slight warmth as it rotated. They will then come back and tell you, all is well and you can move again (always wait to be told you can move) occasionally they will need to stop part way through to re kick over the machine so if you move they have to re align you and you will be some way off the floor still so wait till they put you back down!

My experience

I found the radiotherapy part easy. The first day I was busy being sick and had my little sick bowel between my ankles being told not to move 10 foot in the air. I had no time to worry that I was half naked in front of a room full of strangers. After this it was fine and my team were lovely to me. I moisturised each day (though they say do not moisturise before the radiotherapy that day). I did not realise I would get an ‘exit wound’ on my back too so only did the front and didn’t realise just how high up they were treating. I did burn a little more so on my back as didn’t realise to moisturise here. In the last week or two I started to peel slightly but it all healed well and I was fine. It takes some time for the dry skin go back to normal. They say to stop moisturising if the skin brakes so keep talking to your team. There are also some moisturisers they say not to use. I used Moogoo throughout my treatment as I knew it was a safe one to use and my skin seemed to fair well all the way through it.

You will find you get very lathergic throughout the treatment, after about two weeks it will really compound and you likely sleep a lot. Once treatment stops about two – three weeks after you will find the side effects will be at their most severe but they will wear off over the next few weeks.

I started having problems swallowing after about three weeks as it can inflame your oesaphageus. I found I had to remember to take smaller bites and chew a lot more. I was prescribed liquid paracetamol to take a few minutes before eating to help.

You may develop a dry irritating cough during treatment that may go on for some weeks after. I kept a glass of water beside my bed as I would wake myself coughing during the night. It did go, then came back for a while and has gone again for some time.

My tips

• Be sure to get a good approved moisturiser and moisturise front and back.
• Speak to your team, make sure you make them aware of any problems you have or concerns.
• Stock up on ice cream – found this really helped with the swallowing and soothing.
• Keep a glass of water by your bed to sip if you wake coughing.

After treatment

You will find the effects of treatment stops will get worse before they get better. You may have some neuropathy, coughing etc most of the time this will slowly go. It took about 2 months for the lathergy to wear off and my energy levels to come back.

I managed to return to work a month after treatment stopped on a phased back basis starting with mornings and increasing weekly.

Overall listen to your body, if I tried to do too much I would have to rest for sometime to get my strength back and found this is when my temperatures began to creep up.

Long term I have less mobility than I used to have and muscular aches and stiffness that developed some weeks after treatment, though I am hoping this will gradually wear off and go.

Treatment was really successful for me, I am not longer in pain and the tumour showed massive reduction so it was worth it!

Hi

So very sorry that you find yourself on here.

The others have given you very good advice, I just want to add one suggestion. When you tell children you also need to tell their schools so they can look out and prepare for any changes in behaviours and make sure support is in place should it be needed.

Good luck with the treatment.

Kegsy x

Thank you so much for sharing your experience with me! Its sounds like alot to prepare for. I now see why both my husband and consultant looked at me the way they did when  I asked of i would be able to do some phased days back at work in between treatments. I've always been one to just push through whenever I've been feeling unwell in the past. This is obviously different now and i need to get my head round it all.

This may seem stupid but I've always hated vomiting and would do anything to avoid it. I've been on anti sickness tablets recently for nausea - cyclizine and they dont seem to help much. 

People have told me to expect hairloss but I know not all chemo can cause this and to be honest I actually dont feel as anxious about this as I do about the vomiting. 

With regards to moisturiser following radiation treatment do medical staff recommend one or can ot be one of tour own choice? 

Like you I normally have a low blood pressure which doesn't usually cause symptoms apart from if I stand up from sitting or lying down I get light headed occasionally. I'm not a great water drinker but I've been told on many occasions to cut down on the coffee and drink more fluids. I find this easier in the summer months though so I should be fine with that now. I will definitely stock up on ice cream. 

After I see oncologist on Tuesday I will start getting a music playlist sorted and ready for the weeks to come. 

Thanks again Gina this has been very informative and given me an idea of what to expect. 

Will keep you posted on how things go on Tuesday xx

Hi

I was diagnosed with SCLC in August 2011; it was extensive but 'limited' to the left lung. I started the chemotherapy (Cisplatin and Etoposide) in October and 3 weeks later at the start of my second cycle of chemo I also started 33 daily sessions of high dose radiotherapy. Like you, I hate being sick but thankfully this side effect did not happen to me. My only side effects were drops in both my white and red blood cells; this was sorted post cycle by self injections to boost white cells and blood transfusions to restore red cell count.  About 6 weeks after the end of the main  treatment I also had the 10 sessions of preventative radiotherapy to the brain, which I arranged to have in the mornings so I could bob in on my way to work.

My hair loss was total; head to toe! My Oncologist had warned me this would happen, probably after the 2nd cycle of chemo. So I took control of this as I didn't want to be waking up to find my long dark hair on the pillow. So the week before my 2nd cycle of chemo, my hairdresser (and friend) cut my hair short (about 1 inch) and also cut my wig to match my usual hairstyle. I started wearing the wig from that time when out and about. After the 2nd 3 day cycle of chemo (Mon to Wed) the hair started to come out on the Friday evening. I didn't want the experience to go on longer than need be so every time I went to the bathroom I ran my fingers through my hair and any that came out was very quickly disposed of in the bathroom bin. By Monday morning I was bald but in control.  In the big scheme of things it is only hair and it does grow back. Although what bit grew back after the initial treatment was lost again after the radiotherapy to the brain!

As for work; I went into work for the week before my second cycle of chemo as I felt fine. As the radiotherapy started the following week alongside the chemo, purely from the timing aspect it was impossible to go into work for the remainder of the treatment. I arranged to work from home and did some very strange hours! As the radiotherapy made me feel very tired, I would generally have my sleep when I got home until late evening and then work in the early hours ahead of my next visit to the hospital. Colleagues got used to my 3am emails! So don't totally dismiss the thought of working; people thought I was mad but it helped me to stay sane and not have my life overtaken by cancer.

The thing with this treatment lark is that everyone reacts differently, so one person's experience will be totally different to another  e.g. I did stock up on the moisturiser but didn't need it!  

Those of us with SCLC are very much in the minority on here, so feel free to ask anything.  One positive aspect of SCLC is that it can  respond very well to chemo.

Oh before I forget; I have had no treatment since that initial post diagnosis treatment and so far there have been no signs of the cancer returning.

Good look for the treatment.

Kegsy x

hi kegsy. fantastic post for anyone in this predicament   think you handled your situation very well.   take care.  as you say not many on here with SCLC