Hello
My husband has been diagnosed with Stage 3b metastatic melanoma, has recovered from his surgery which included a right side parotidectomy and neck dissection and his recent CT scan was clear. He started his planned one year adjuvant treatment with a checkpoint inhibitor which is 6 weekly infusions of Pembrolizumab in March so is 5 cycles in with the next one due in early October.
His side effects so far are dry mouth (exacerbated of course by the loss of one parotid gland), skin rashes and lack of appetite which started after one month from the first infusion I.e. from early April. The loss of appetite is variable with definite dips after 3 infusions but not after 2 of them but has never returned to his pre infusion normal level. The current downturn has lasted more than 3 weeks and he has now lost another 11lbs after being a relatively stable weight for a while. He has now lost a total of 15% of his body weight….dropping from 13stone 3lb to 11 stone and he is just over 6ft tall.
He has had a phone consultation with a dietitian and is using Aymes supplement drinks and Calogen shot style drinks alongside his other meals. He has been advised to eat little and often and his dry mouth makes eating lots of food types difficult. He doesn’t find any of the artifical salvia sprays or lozenges help with the dry mouth but chunks of pineapple help somewhat. We have a leaflet detailing what snacks and food to try and how to add calories to what you do eat.
We have just had a pre infusion chat with the oncologist’s registrar who doesn’t seem overly concerned about the amount of weight loss and says it is up to my husband if he wishes to continue with his treatment. She has suggested a low dose of steroids to stimulate appetite but my husband is reluctant to do this due to the possible side effects of steroids and the fact that he thinks they will suppress his immune system, hence acting in the opposite way to what immunotherapy is aiming to do.
I am worried as my husband is obviously feeling weak due to lack of calories and nutrition and a weak body will not improve his chances of dealing with future melanoma recurrence.
Is this amount of weight loss considered acceptable during cancer treatment ?
I know patients react differently to immunotherapy treatment but the oncology team at the local hospital don’t have much experience in using immunotherapy drugs and do not seem to be able to offer much advice as to how long the side effects and loss of appetite will continue for other than to say it could be for the whole duration of his treatment.
Would it be an option to pause treatment to see if his appetite returns to normal or at least improves ?
I am not sure that it is feasible or advisable for him to lose any more weight and assume ideally that he should gain some weight but this is nigh impossible with his current lack of appetite.
Many thanks for your help.
