Double whammy update

FormerMember
FormerMember
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Morning all, we have a dusting of snow today, looks lovely although it's only 1*

After the initial shock of my brother's diagnosis and the disappointment of my last scans showing disease progression in the brain & liver tumours things have settled down.

My brother is having 4 cycles of aggressive chemo and then a break and repeat PET scan to see if he's stable enough to be offered surgery which he's been told is his only chance of survival. Nothing's definite till it's definite as he's also in a tier 4 area and the hospital is stretched to the limit.

I started my 5th line of chemo, oral Capecitabine, to try and slow things down. The 1st cycle was ok but I had problems straight away with the 2nd cycle. Half way through & having only managed a little over half the dose I rang the chemo nurses and was told to stop taking it. I had constant nausea, a day of vomiting despite medication, mouth ulcers, palmer/plantar syndrome, so bleeding finger tips and painful feet like walking on broken glass. I was alternating between no sleep at all to 14 hours one night and could not get warm. 

I've heard oral chemo referred to as "chemo light" but that certainly hasn't been my experience. if I wasn't such a lady I would swear!!

 I'm seeing my Consultant on Thurs and have no idea where we go from here, or even if there's anything left to offer. I could have stronger medication to manage the side effects, perhaps steroids, but that medication has it's own side effects....

On a positive note my hair, eyelashes and eyebrows are growing back and we've got the pain management under control BlushFingers crossed

xx

  • FormerMember
    FormerMember in reply to FormerMember

    That is such good news and a shot in the arm (topical...) for those that persevere - really well done and all power to you!

    SiT

  • I am so glad you got good news tinalay. Even though I have never met you you are such an inspiring positive person. Praying now you brother will get good news too. God bless. Love lamb

  • FormerMember
    FormerMember in reply to Little lamb

    Thank you for all the lovely comments.  how were your bloods? You were a little nervous too and I really hope you had good news. Your poor wife, is there any way she could be put on furlough as you're shielding?

    xx

  • FormerMember
    FormerMember in reply to tvman

    Hi tvman

    I just seen your post.I hope your result were good.It’s hard for our partners and with all this virus it  seems to be a nightmare.It must take special people to look after someone we are lucky to have met them. 

    Anyway take care Hibiscus

  • Hi Tinalay and 

    Thanks for your concern Tinalay and Peggy. My specialist nurse rang on cue and she gave me the red cells count which was 107 and that's low, I'm anaemic, I've been lower, 82, and that caused a blackout. I would be much lower than 107 if I wasn't self injecting weekly with a medication that encourages my bone marrow to produce more red blood cells. 

    However I have, for the last 6 months, had a neutrophil count of 1.0,  that is the borderline of ok and neutropenia. The normal figure for neutrophils is between 3 and 9. Unfortunately my neutrophil count is 0.93 putting me in the unenviable state of neutropenia, I now have little or no resistance to infection and if I get some sort of infection I have to ring an emergency number in the unit and get up to hospital. 

    Is this the beginning of the end? Possibly, it could be the start of Acute Myeloid Leukemia (AML). It's not good, that's for sure and it'll get in the way of working in the garden and making little wooden projects. Darn it! So inconsiderate to burst into my life! 

    Fingers crossed that my bloods return to a more normal state. There are many different disorders of the bone marrow, depending on whether the problem is red cells, white cells, platelets or combinations of the three. My actual cancer of the bone marrow is called Refractory Anaemia-anaemia meaning low red cell count and refractory meaning unmanageable. That says it all.

    Take care everyone and stay safe

    Tvman xx

    Love life and family.
  • FormerMember
    FormerMember in reply to tvman

    Will keep all crossed your blood count improves take care stay safe Hibiscus

  • FormerMember
    FormerMember in reply to tvman

    I’m very sorry to hear that  I know you’ve been neutropenic before and somehow managed to get the count up again. Shielding will give you some level of protection but it’s very tough when you can’t do the things you enjoy. How often do you have blood tests? I hope your blood count will improve enough to give you some breathing space and the chance to get back out into your garden xx

  • Hi

    Sorry about the blood results and what it might mean. But, lets hope that they do return to more normal levels and you can get on with what you enjoy in life and what we enjoy seeing pictures of when you post your garden toils.

  • I hope and pray your situation improves loads of love and hugs xxx

    Flippen
  • Hi friends

    Thanks for your messages of support, it really means a lot. Yes  I have been neutropenic before in the days when I used to visit the cancer unit in the hospital, those memories are fading slightly. They were the days of turning up to reception in my wheelchair and being asked to take a seat in the waiting area to which I reply that I brought my own which raises a smile. The same old joke but as I make my way into the waiting area there's a sea of smiling faces. Then I pass the free drinks machine and free biscuits that my wife obligingly stops at.

    Strange but when my red cell count drops below 100 I'll be asked to return in 4 weeks but when they're over 100 it's a recall time of 8 weeks, even if I'm neutropenic. I've asked of different doctors if I can eat or drink anything that would improve my red cell count and each time I'm met with a shake of the head. I'm obviously thinking of red meats etc but that has an elevated effect on my ferritin, indicative of another blood problem, Haemachromatosis which my brother and I both have, thanks to our parents and also back to the Vikings (it's also given a colloquial term of iron overload or the Celtic Curse) so.not only are the Vikings guilty of raping and pillaging but they were also sneakily distributing genetic mutations!

    Take care and stay safe everyone

    Tvman

    Love life and family.