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doctors tomorrow

Topic Made On: Jan 01, 2015 02:27pm
sunshinefrankie83

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Hi all, hope you're all doing well.my dad has a doctors appointment tomorrow to discuss the results of his ct scan.he was only diagnosed in Nov so this is all still very new to us and I'm so nervous about what the doctor will say tomorrow hope you're all doing well, and all the best for a positive and healthy 2015 X




Replied On: Jan 02, 2015 03:18pm
steve y

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Hi,
Good luck ,for I guess today, your Dads Scan.
I have just had my (second) scan to see the results of my chemo,(FCR) which has gone well, a couple of hiccups along the way but my scan showed my Spleen was pretty normal in size now and no node points to see. My consultant said it was conceivable to stop treatment now, but would continue my last two sessions on a 75% dose. I was in the middle of taking my (fifth of 6th monthly FCR courses) on Christmas day, I still managed to enjoy my Christmas lunch and I must say, only on the early courses did I lose my appetite for a couple of days. I feel a little queasy for a few days after but nothing to speak off, as I have said earlier, just seems like i have a hangover for a few days, (without the pleasure of indulgence.
I guess everyone is different, If your Father has to have treatment, It is important to drink plenty of water, I find I feel worse If I relapse on the three litres of fluid a day.

After my fifth round I can honestly say I feel great, There is light at the end of that tunnel and have come through with the love and care of my Family, which It looks like your Dad has plenty of.
Looking forward to 2015, my plans are to get fitter, eat healthier and enjoy life to the full.

One tip , when you see the consultant, ask all the questions you have thought of beforehand and don't go alone, as I often cant remember a thing when I have left the room, luckily my Partner is paying attention for me !.
All the best for 2015, Look forward not back

Steve, Coventry



Replied On: Jan 06, 2015 10:36am
sunshinefrankie83

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Thanks Steve. It was a bit of a confusing appointment by all accounts. My Dad said that the CT scan showed an enlarged spleen (which we knew) and some enlarged nodes throughout his body. His WBC has actually dropped slightly. All that said, the doctor said to come back in 5 weeks but that treatment will probably be sooner rather than later. Not sure how I feel about it, as leaving watch and wait feels like a horrible step, but also knowing that treatment may make him feel better and hopefully enter him into a period of remission. This is still so new that it's taking a while to sink in and understand what's been said.

Glad to hear your treatment is going well, that's fantastic news. How long have you had CLL? Is this your first round of treatment?

All the best for the future Steve, and thanks for your reply X



Replied On: Jan 08, 2015 12:00pm
Cassie

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Hi
I know that it must be confusing for you and your father as I also was put on watch & wait when diagnosed only to be told two months later that I would start FCR treatment for 6 months, which was daunting.I realise now that I didn't ask enough questions at the time, I hadn't had time to get used to my diagnosis! However I have now been in complete remission for 3.5 years and feel great, doing everything I did pre-CLL.Low anti-bodies are the result of treatment but this hasn't been a problem. Write a list of things you are unsure about, to ask at the next consultation.I also keep a small notebook/diary of medical issues which is helpful when asked questions. I wish your Dad all the best, and there is light at the end of the tunnel. Carol



Replied On: Jan 10, 2015 10:41am
steve y

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Hi sunshinefrankie83, In answer to your questions, I was diagnosed with CLL in October 2013, after a routine bood test and 55 yrs old, up until then I was working six days a week, physical work at weekends, went to the gym regular, played Badminton, swum etc, at 55, In my eyes I was fitter than at any time through my life. I had raised glands on my neck and felt a bit tired of late but put that down to getting older.!
I had just gone through a marriage break up and had a stressful couple of years at home, my family blame the stress for the illness, I believe stress is a factor in many illness but I guess we cant beat the roll of the genetic dice.
I saw a consultant, had a body scan too and was told that treatment may be a year or two away. My WBC doubled though over the next 6 months of check-ups, I had several areas of raised nodes and my spleen was swollen, I think the fact that I was fit and healthy also had a bearing on when my treatment would start and I think this will probably be something your Dads consultant will be looking at too, It is favourable If the patient is fit and healthy before Chemo starts, In all I think It is a few things that trigger treatment.
My treatment started in June 2014, I had a reaction on treatment three, to the Rituximab infusion, (passed out). I had this again as an in patient over 12 hrs, as opposed to the 4 hrs in the day unit. All went well and I now have had the Rituximab in the day unit again and with no adverse reaction at all, I think I am getting used to the tablets too (FCR) treatment.
On treatment four I picked up a blood infection and spent six nights in hospital, which was a setback but I had become complacent about my health and keeping a check on my temperature, the source of infection was never found but probably came from my own body as a result in a low immune system.
These were setbacks but looking back were more frustrating than anything.

Over Christmas I had treatment five and will see my consultant on the 22nd this month. The last dose was at 75% because the treatment has gone so well. I am set to see a new consultant this time as my old one is leaving for Australia.
For the future I intend getting fitter again, taking up my Badminton, I feel a great deal better , although get a bit fatigued sometimes.
I aim to get fit , partly in preparation for any relapses as I believe It will help me in the future.

Hopefully, when your Dad starts treatment (and for me in the future), there will be new and better drugs available. As you can see from Heathers latest post, Ibrutinib, Is I believe a new drug and being trialled, I am sure members here will put me right If this is wrong, This drug, according to Heathers post seems promising.
The Rituximab that I take, I believe, too was not available some years ago so there are new drugs out there all the time so stay positive, keep as fit and healthy as possible and enjoy life is the best advice I can give.

All the best to your Dad,It looks as If he has a caring family around him which helps too.
I have a new partner , and now live a stress free life and ready for whatever life has to throw at me.

Kind Regards
Steve Coventry



Replied On: Jan 22, 2015 04:18pm
sunshinefrankie83

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Hi all,

Thanks so much for your replies, I've read them with great interest. I'm glad you're all doing so well and it really gives me hope for the future. How are you both feeling? How did your appointment go today Steve?

My Dad is being seen again on 2 Feb. My Dad thinks treatment could be imminent but he's quite positive about it. He's had a chest infection recently but managed to shake it off quite quickly with antibiotics. He said he's going to ask a lot more questions at the appointment about treatment and what it would involve, and I was able to give him a little indication because of the info you all have kindly shared so thank you for that.

Please keep me posted on how you're doing, thinking of you all. Hope today went well Steve



Replied On: Jan 22, 2015 04:19pm
sunshinefrankie83

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Ps My Dad said his spleen is feeling slightly larger which has worried me; does anyone have experience of this? The doctor told him to keep an eye on it in general, to be familar with how it feels and the size etc, and my Dad thinks he has detected a small increase in its size. Could this be a possible trigger for treatment?



Replied On: Jan 23, 2015 09:20am


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I was first diagnosed in 2007 from a blood test - routine medical - with only slightly elevated counts. At the time I was told that it was possibly CLL but probably wouldn't be an issue for many years so I just got on with life as normal. Three years later I had another routine medical and the Dr performing it noted a swollen spleen. She reviewed the blood test results and it didnt take long to put two and two together and come up with CLL. So, that was in 2010. From that point onwards, every three months, I had a Haematoligist prodding and poking my spleen with varying conclusions of how swollen it was. Personally, I would say that it increased and decreased in size because occasionally I felt discomfort but at other times nothing.
Jumping forward to 2014, they performed tests for an autoimmune disease because not only was my spleen swollen but my hemaglobin and platelets were very low. These came back negative so I was told that treatment was probably on the cards in the near future and that the spleen would most likely go down with treatment (chemo).
In July, a Doctor hurrying to work failed to give way at a roundabout where I happened to be cycling at the time. A CT scan showed a ruptured spleen. I was transferred to Kings College Hospital where I was observed going downhill very rapidly. One emergency operation later and my spleen was removed. A normal spleen is around 200 grammes. The lab at Kings reported that what they received weighed 2.2 kilos !
So, skipping the six month operation recovery process and later operations to join broken bones, I actually feel good. Platelets and hemaglobin are now almost normal and my ALC and WBC have dropped significanlty. I have been vacinated against Pneumonia, bacterial influenza, flu, and every type of meningitis. From a spleen point of view, the prognosis is quite reasonable so long as I stay on top of any infections.
In conclusion, if you skip the accident part of the story, I had a swollen spleen which didnt really bother me that much. It would probaly have returned to normal after treatment but, even though it had to be removed, the result on blood counts has been good and the future seems relatively unchanged.



Replied On: Jan 23, 2015 09:25am
steve y

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Hi Sunshine Frankie,
I am typing this as I sit in the Coventry day unit, having my last of 6 Retuximab infusions, (last round of my 6 months of chemo).
My spleen is back to normal now, it was 4-5 cms enlarged, which was only one of the triggers for treatment. I think the bloods will be the most important triggers.
I can say that my enlarged spleen did not give me any trouble, perhaps just a little discomfort, especially when the consultant examined it, otherwise OK.
I am pleased to be having my last treatment for hopefully a good few years. There is light at the end of the tunnel.
Good luck to your dad, try not to worry too much.
Steve



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