Finally diagnosed

Hi Bluedays,

I am sorry to hear what you and your hubby are going through. My cancer diagnosis is different to your husbands … but it is a sarcoma so something of “the same road”.

My sarcoma took quite some time to diagnose.. What had been thought of  initially as  primary bone cancer, is in fact a metastatic secondary.  A bone biopsy then classed sarcoma with the  originating primary being termed as “unknown”.  The primary tumour was not picked up via MRI until quite recently.  Surgery has been ruled out for me too due to met and chemotherapy plus radiotherapy (for my bones) are the treatment plan. 

The phrase I am using is “living with” which I prefer to “ incurable” … and I try to count my blessings and find the positive in every day. The statistics are not for happy reading but I try to combine a realistic outlook without getting negative. Taking my brave face off at times can actually feel helpful and I have asked to be referred to the clinical psychology service for oncology. I’m not sure I need / would benefit from such a talking therapy but thinking I might as well and have nothing to lose!!

As I understand it, a heart check is standard clinical practice prior to a course of chemotherapy! I am due to have doxorubicin (the Red Devil) as a day patient on the first day of every three weeks for 6 sessions- so 18 weeks in total.  This will be by drip. 

Hoping your husband’s treatment goes well and he is one of those it works for!!

Not the way I expected 2024 to go either! Life can be like that I guess.

Pat Pops

I started doxorubicin in April last year but unfortunately my mets doubled in size. I then started Gem/Tax which has left me with long term problems including neuropathy in my fingers and feet. I was so poorly and unable to eat or drink and was hospitalised. Both Mets grew very slightly but my consultant stopped the treatment and to be honest I couldn’t have taken much more. He then told me to stop treatment and just enjoy the short time I had left. I refused and told him that I would keep going for as long as possible. I have just finished my second round of Dacarbazine and the CT’s I’ve had after each round have shown shrinkage. The Dacarbazine has been easy apart from losing all my fingernails and toenails and low neutrophils and platelets which has delayed some treatments. I hope your husband’s treatment is successful but if the first chemo isn’t right there are others to try. 

Just wanted to thank you for sharing this as it helps me too as I get my head around my LMS ‘brand’ if sarcoma. I can’t imagine being told to chose quality over quantity and accept the inevitable. What a hard decision / dilemma for you. So pleased it had worked out for youDeborino..