October 2024 - bad and good news , alongside a stressful couple of months

2 minute read time.

Hi All

Sorry for my absence, we have been on a bit of a roller-coaster over the past few months..  

Dal is well!

After several steroid attempts to clear the pneumonitis in his lungs, it was decided by the sponsors' that Dal's lungs were not going to correctly heal, and that the trial treatment was only going to make things worse. Dal would be taken off the trial and we would now have to wait to see what else could be done for him.

Dal has had several scans, blood tests and periods of waiting whilst decisions were made on next steps, We were aware that there had been movement in his liver lesion and was advised that either further, different chemo would be considered or lazer ablation surgery, but we had to wait for further scans to dictate which.

It has been stressful, because Dal has now been off treatment since May, and considering how aggressive his type of tumour had been, not knowing what was going on inside of him was sort of eating away at me... forever positive, Dal increase the turkey tail mushroom intake, to counteract the lack of treatment and continued his meditation, and positive affirmations on his body and we continued our nightly acknowledgement of good days, and put in our requests for good news.

On Wednesday, we were given some news.   The liver lesion was actually two, 1.5cm spots which had joined together, making it too big for lazer ablation, the other turmours were behaving well and because of this, further chemo may not yet be needed, so, next steps will be Targeted Radiotherapy, we have a meeting next week, and then Dal will undertake 5 back to back sessions of radiotherapy directly on the affected area on his liver, he will then be reviewed for further next steps. 

Dal's  hair is still growing, all of his bloods are really good, white and red blood cell counts are back in normal range and overall, if you didn't know he was living with this alien, you would not know that he was ill at all...   he does sometimes get out of breath, and is occasionally more tired than normal, but considering everything, we are extremely blessed.

I will try to keep you updated a little more regularly, it is a huge relief to know, that after all these months without any treatment, the treatment that he had previously has preformed what can only be classed as miracle's, and our on-going gratitude is sent to everyone involved in Dal's treatment, we know how quickly things change with this disease, so we will remain ever vigilant and pray that Dal continues with positive outcomes. 

Take care of you. 

Lowe'

Anonymous
  • Hello Lorraine,

    Just checking how Dal is? I'm hoping he continues to do well and that there has been no more unwelcome news.

    Rod's CT scan after 4 cycles showed a 50% reduction in all tumours so we're very pleased that treatment has been effective so far.

    Next scan is on 21st December.

    All the best to you both,

    Lorraine

  • Hi Lorraine

    Great news about Rod with the results of the CT Scan, 50% is amazing, so very pleased for you both.  Dal has a Scan on Dec 20th, and then we have to wait for results, once we have those,  I will update the blog. Since having the Radiotherapy Dal has been struggling a bit, and is often quite uncomfortable, but we can only hope that  he is healing. 

    I wish you both all the best over the festive season, and hope to be back on the forum when things have settled down a little. 

    Thanks for checking in, I nearly posted yesterday, but logged back out as didn't really know what to say.   

    Take care of you's

    Lorraine

  • It's been a while, Lorraine. I don't know if this is a bad sign for the two of you and I sincerely hope not. We had a real set back on 11th, with the last CT scan showing growth and spread again. So, Rod has been taken out of the trial. He is awaiting 2nd line treatment with Paclitaxel. Since then the decline has been rapid. He was eating pretty normally, apart from the discomfort due to his sore mouth up to the oncologist appointment. Now he can't eat solid food and is struggling at times with liquids. Today the oncologist called him in and they've decided to fit a stent in the hope that he can attain a level of nutrition that will sustain him through chemo. They have a bed reserved in case he continues to struggle to drink as the oncologist thinks his extreme fatigue and general feeling of illness could be because of dehydration. 

    Trying to stay optimistic and upbeat, because Rod is struggling not to sink into the pit right now.

    All the best,

    Lorraine x

  • Lorraine, this is terrible news, there are no words really and I am sorry for that! I just have hopes and prayers that the MDT can offer the 2nd line treatment quickly.  Is there a 2nd line trial they can offer? 

    It is both frightening and sickening, when you watch you loved one struggle in this way, and I can only reach out to you and say, I am around, just not on the forum us much, but please drop me a message, anytime, I am here for you.

    I truly hope they can make Rod comfortable and stop the growth, deter the fatigue and pull you both through the other side of this... Thinking of you. 

    Lorraine. xx