Hello all,
After day 1 of the final BEACOPP and spending 18 hours vomiting, my daughter made a decision to end her chemo and said she doesn't want to carry on which meant no more GSCF injections as this was a huge source of pain in her back and knees. At her check-up last week she asked if she could have her PICC line removed but was told her lymphocytes were 0.5 and she was at risk of infection or worse sepsis and advised her to keep it in - which she did.
Woke in the middle of the night today crying in agony over the pain in her knees. She said it feels like she's being hit over the knee cap with a hammer. It's so hard to watch someone you love and care for in so much distress and all I can offer is ibuprofen and a hug. We rang the emergency number who to be honest were frankly quite unhelpful - lovely but useless. Luckily she is going in today for a blood test so with luck she can be assessed at the same time. I know it is different for everyone, but can anybody offer light at the end of the tunnel as to how long this pain might last? Also, when should she expect signs of hair to regrow. For a young lady who had long blonde hair to being completely bald and shiny all over, this is another cruel part of the treatment and I am sure she would feel slightly better if it began to reappear.
As always, grateful for any support 
Hi BobbieRosie …… sorry to hear about the significant knee pain she is having.
It’s a good plan to leave the PICC in until her lymphocytes are up…… I have had Pneumonia and Neutropenic Sepsis a few times…… the weeks in hospital was not a great experience.
It will take a few weeks for the effects of the chemo to get out of her body and thus will then allow her hair to start to grow….. like every hi thing else this will take time.
Going through Lymphoma treatment is a balance…… treatment attacks the cancer but there is fall out around it. I don’t know how active your daughter has been during treatment?…… but treatment does unfortunately waste muscle mass and if she has been inactive this will have been compounded.
Over the 8 years I have volunteered on our Lymphoma groups I have talked many people who have experienced the same effects…… must admit that they were not active….. or less active then they had been before their diagnosis.
I did ok during and after my man chemo but I had a bad time during my secind Allo (donor) SCT so ended up in bed for a good period of the 4 weeks I was in hospital…… this resulted in me not being able to walk as the muscle mass in my body, especially my legs was melted away so I ended up in a wheelchair and had to have physiotherapy for 3-4 months ti get me back walking and yes….. the pain in my legs was very bad but determination and time fixed this.
Up in our Heamatology and SCT units these signs are everywhere….
……. I went I to my SCT as a healthy month away from 60……. and left the unit as a 90 year old…… 9 years 8 months on I am living as good a life as any 70 year old can live.
Let’s look for her to get help to move things forward.
((Hugs))
Thank you for this. We were meant to have a wig appointment - seems like months ago now but in all honesty, she has just been too ill to make the 25 mile car ride to Southend on sea which is out nearest shop. It's so difficult to make any firm plans because one day she will be chatty, positive and almost raring to go and the next day, she will be in tears either in pain or just too weak to do anything at all. The shop have been ok with us and said just ring on a good day and we'll try to fit you in the same day so we remain hopeful.....soon.
All hugs very warmly received,
Thank Debbie
Excellent, thankyou, I will see if this helps
