Advice for chemo radiation therapy

Hi Thornaby Lass

So very sorry that you have cause to be on here.

Although my cancer is Small Cell Lung Cancer (SCLC), my treatment was similar.  I had 4 cycles of chemo (each cycle over 3 days every 3 weeks) and 33 days of high dose radiotherapy. (Mon to Fri). The radiotherapy started on the first day of the 2nd chemo cycle. I think this was to allow the first cycle to start shrinking the tumour ahead of the radiotherapy.

I too went into the treatment fit and healthy (cancer aside). My Oncologist warned me that the treatment was brutal, and he wasn't wrong!  First few weeks were a doddle, then the cumulative effects started to kick in. The chemo caused both my red and white cell count to drop through the floor. For the white cell count I was given injections to increase my bone marrow production (I did these myself), For the red cell count, after both my 3rd and 4th cycles of chemo, I had blood transfusions.  These were amazing; arrived barely able to walk and six hours later skipped out!  The most common cumulative side effect of the radiotherapy is extreme tiredness which can continue for a while after the last session.  The main thing is that although brutal, it was very much doable, and most days I was able to live a relatively normal life.  That was 10 years ago so very much worth the bad days.

They only prescribe a strong treatment plan if they believe the person can medically cope with it. and the side effects. Plus they will provide support for any side effects. 

One major tip for your OH; at ever radiotherapy session, the radiotherapists will ask OH how he feels. They are not simply being polite and are genuinely asking how he is feeling. He must tell them if he is suffering from any side effects. It will not stop the treatment session but if necessary they will arrange for him to see one of his Oncology team after the session.

Everyone reacts differently to treatment; so he may well sail through it!

Hope this helps a bit.

Kegsy x

Hi kegsy,

Sorry for the delay in getting back to you but with hospital appt etc just read your reply.  Firstly thanks for taking time to reply and secondly for all the info you gave. 

I would like to say I am so pleased you got through it and are still here to tell the tale.

My oh is starting treatment on 24th dreading it but you have given me such hope that it is doable thank you so much.  My main worry - apart from the cancer itself - is the blood cell count dropping and the subsequent transfusions. He had a mini stroke 7 years ago and is on antiplatelet meds and we have been told that blood clots are a side effect, so he's at higher risk of stroke as it is before all this treatment.  I know they will monitor him

He wants to do this treatment although brutal and I will support him as best as I can but is scary.  

Can i ask how many transfusions you had, and were they given to you during treatment, or did you have to stay in hospital overnight?  Also did the injections for the white blood cells help stop you get infections?

Thank you for help, and hope you are well after your treatment 10 years ago.

Regards Wendy

Hi Wendy

Great news that the treatment is to start very soon.

Please don't assume/worry that OH will have the same side effects as I did; we all react differently to treatment.  Yes they will monitor him very closely; they did with me and I didn't have any underlying health issues.

If it does effect his blood cell count the 'remedies'  for me were straight forward.  The treatment for the  white cell count was approx 5 daily injections to increase my bone marrow production, which in turn increases the production of white cells. I didn't get any infections during my treatment.  I didn't want the faff of District Nurse visits, so I did them myself .   The blood transfusions were done as an outpatient, after I had my radiotherapy session for that day.  Two units each time; it is a very slow process as they literally drip fed it into my vein over 2-3 hours per unit.  They monitored my blood pressure throughout the process.  OH's medical team will determine the best course of treatment should his red blood cell count drop.

Coping with the treatment is a day-by-day thing and cannot really be planned for, as I said before everyone will have their own story.

I hope this helps a bit

Kegsy x

Hi Kegsy

Thanks again for your informative message.  You have answered so many questions for me can't thank you enough.

I know everyone reacts to treatment differently, so will do as you say and take one day at a time and keep fingers crossed it won't be too bad. Will let you know how things go if that's OK.

Thanks again. 

Hi

Please do let me know how everything is going and/or you have any questions.  Others on here will be following OH's progress even if they haven't posted..

I wish you and your OH the best possible outcomes.

Kegsy x

Hi Kegsy,  will do, if it helps anyone else going through something similar I'm all for it.

Again thanks for all the info and advice. 

Wendy

Hi all, just thought I would post update on my husbands diagnosis ofung cancer and his treatment journey to help others.

He started chemoradiation 1 day chemo every Monday for 6 weeks and radiation Monday to Friday for 6 weeks. It was hard for him, especially after week 2/3.but doable. He finished his treatment on March 4th and got to ring the bell which was a milestone. He felt good and was so pleased to have finished his treatment.  However he got an infection and was admitted to hospital on 10th March, turned out he had double pneumonia and sepsis he was in for 2 1/2 weeks before coming home. He was very weak but he made it.  Since he came out he has picked up considerably but was on dexamethasone for inflammation. No-one told him to taper off them so when his tablets ran out he stopped them (very bad), never stop without tapering. In panic as he went downhill so fast I rang lung nurses who immediately put him back on dexa and thankfully he improved. That was early April.  The next day after restarting dexa out of the blue he had what we thought was a mini stroke and was taken to hospital, and was eventually diagnosed as having had a siezure or fit. He has never in his life had a siezure before, so think it was related to stopping and restarting dexamethasone but Dr's won't confirm it.

He is now on anticonvulsive meds till he gets seen at first fit clinic, he can't drive, and is very tired all the time as a result of new medication.  During all of this he was due to start immunotherapy, but because of the siezure he passed the date to start durvalumab, so he has to rely on the chemoradiation to have done its job and killed off the lung cancer.  

He has a 3 month scan on 23rd May, and we are hoping for good news after all what he has been through.  Will post update when we get news from consultant.

Good luck to all going through this journey, and keep going one day at a time, that's what I have learned to do. 

Hi

Thank you for the update.

A few bumps in the road but great news that he has completed the chemoradiation treatment.

Good luck for the scan.

Kegsy x

Hi Kegsy, yes bumps in the road but hopefully past that now hopefully. Will update once we get ct scan details but on a previous ct scan he had done on his lungs while in hospital with pneumonia the oncologist has told him that the tumour has reduced and that was not long after his treatment finished maybe a month or so and he seemed optimistic which is a good sign. He said the radiation would keep working for up to 3 months following his treatment so we are cautiously optimistic. 

Hi there, I had exactly the same treatment as your OH. However chemo was stops after only 3 sessions as my health deteriorated, my white blood cell count dropped dramatically and I was put in isolation for two weeks to stop me getting an infection. I had several transfusions and eventually cam home having lost 4 of my original 12 stone. 
Not all doom and gloom though, my neck and throat are clear, my lung tumour has shrunk although still active. 

I then had 12 months of immunotherapy which I finished in February. 
my weight is back, I’m eating normally and I am now only on 3 monthly checkups. Believe me your OH will be fine. 
I also had an aneurysm on my aorta that was increasing in size but surgery was held off until oncology were happy for it to go ahead, which it was on the 1st March. 
It’s tough but manageable.