AVBD skin rash

Hi  and welcome to this corner of the community. I am Mike Thehighlander and help out around our blood cancer groups. Although I had a rare skin NHL that made all my skin very very itchy for over 15 years my treatments did put this to bed and get me into remission back in Sep 2016.

Lets see if any of the HL group members are looking in but I have read that dropping the B can help reduce the itchiness ((hugs))

1. Hi HLnewbie. Haven't experienced any itchy rash yet, I'm about to have my 2nd cycle of ABVD today, but I have been very breathless and coughing recently and had to have another lung function test. My consultant may drop the bleomycin depending on the results, as it can cause damage to the lungs. B seems to be the culprit for quite a few things! Or, I may be switched over to BEACOPP for the remainder of my treatment, so maybe this might be an option for you. No doubt your consultant will be able to advise? Best wishes and hope you get it sorted soon.

Hi Clive & Mike,

thanks for your responses! I wonder if either of you may be able to help… 

When I was diagnosed I was under the care of a wonderful consultant who was very straight talking and I felt very secure and reassured with the plan. Following my first cycle the consultant moved trust leaving me without a consultant temporarily. I was followed up in clinic by the registrar who I didn’t feel very confident with as she hadn’t read my file and didn’t know my treatment plan. When I was highlighting my skin I was made to feel as if I was an inconvenience that she had to leave her clinic and come review me. At one point she assessed me in the waiting room with other patients looking on. 
A new consultant reviewed me yesterday and then gave me the option of dropping the bleomycin and seemed rather blasé about it. I said to drop for fear  of my skin continuing to breakdown but now I’m not sure. The consultation itself was very distressing as my PET scan results which I had been given by the registrar were completely different to the official report. I thought that my PET was negative but it showed the cancer is still there.

what do I do if I have lost faith in my team??

Jean 

Hi Jean , sorry to hear your experience, some consultants and registrars need to go on a patient care 101 course

I won’t defend the Consultant and Reg as I don’t know anything about them but my Dermatology (I have a skin NHL) and my Heamatology Consultants are the most obnoxious people you would ever meet, no patient skills and we have had a good number of ‘words’ between us…… but I have been with them for many years now so ‘understand’ each other….. and they do make up for it clinically.

Apart from changing hospital you are stuck with the team. Have you a Specialist Heamatology Cancer Nurse as these folks tend to be more supportive snd can cut through the mist ((hugs))

I had a few issues with this as well! My main consultant is a very nice man and I really trust him but he's not always there to do phone appointments as he's busy (which I totally get obviously.) I would often get different consultants or registrars and some of them were worse than others. Some would listen and respond and some would brush off things like I was an inconvenience. It really just depended on who I got and whether they had read many notes or not on my medical history.

I found this is be very frustrating but I guess a lot of it comes from a certain way that you are and what the consultant is like and whether you clash. Sometimes we just don't get on with someone else. 

I would definitely speak to your specialist nurse if you can. I found her to be supportive every time and she would always find out information for me and pass on messages for me if I had concerns and I generally found that this worked better because she would get through to the consultants.

I hope you can get some more concrete answers about what is going on !

Jean

I initially had some issues but mainly the administration side of things. I think like all medical people, they've either got a good bedside manner or they haven't! I've got a great Macmillan support nurse too, and responds to any of my questions very promptly, and will pass on any concerns to me consultant. 

We actually put in a formal complaint to PALS (patient access liaison service) and within 2hrs I'd had a call from oncology. It was to do with biopsy results taking far too long from Imperial College, blaming it on a Bank Holiday causing the delay. It seemed like 1 day off sent their diagnosis into meltdown! It took nearly 3 weeks, all the time I felt so unwell, and my consultant couldn't tell me what type of cancer I had. Stressful to say the least!

The whole team are now very good, and I must seem a pain in the arse to them, but if I now ask questions or don't understand what they're telling me, they take the time to ensure I'm fully in the picture 

Hope things improve for you, and remember, ask questions, ask for a new consultant if you're unhappy. At the end of the day, we're the ones with cancer not them!!