So 3rd time lucky my husband finally started his pemextred maintenance treatment, after 2 delays due to Creatinine levels suddenly spiking 3 wks after his 4 carbo/prem cycles.
He went from 75 on 11th Dec last full chemo cycle, to 3 wks later to 111, a week later 108 IV fluids given & kidney bladder scans done both scans clear.
Today 20th his Creatinine level was 103 so they decided to start maintenance. But when I asked questions about " what if in 3 wks" the levels rise again, what happens. The answer was cross that bridge if it happens, doc really made it sound like end of treatment, thats how she came across.
Husband not illl not side effects no cough pain no blood urine normal weight gain looks healthy.
I have messaged the Marsden and requested a call, as clinic was so busy, but at the same time answers are needed.
Hes glugging so much water as per doc advice. He had more IV saline before & after treatment, treatment was about 10 mins. He had Zometa, but as now gone from 3 weekly to 12 weekly, is this normal? Never had chance to ask. Today was utter confusion, nurse told him his dexamesasone is too high should be 2 per day not 4. More calls defo 4 per day for 3 days. Ondestron finished, as carboplatin as ended, nobody told us, so another call.
By this time I was tired & confused, hubby really didnt take all in & fed up as he thinks tteatments going to stop.
He as been lucky with chemo no side effects at all, if anything hes never felt better. But feels low as he thinks if next bloods are high thats it & TBH thats how I feel. I very confusing day, esp with meds &.what nurse said.
I appreciate how busy clinics are, but when you have questions & dont get answers, its worrying.
The one good thing husband doesnt feel ill just confused & I'm just worn out with chasing for answers & quite snappy only because I'm do tired. Hubby is going away Thursday till Monday for some time for him, only to the coast, but hopefully gives him some time out.
As anyone been through this situation where maintenance chemo is stopped completely because of Creatinine levels, even though patient feels well & no symptoms whatsoever?
Really feeling the strain tonight....
Tillyboo I am glad to hear that Hubby’s treatment has restarted, and that he is feeling relatively well. I think the nurse has answered your question in the only way she could. You are chasing answers for something that may never happen. No one will know if his treatment will stop as no one has the results to a blood test that hasn’t happened yet. And the results of that blood test could bring up many scenarios, so an answer at this point would be a guess.
I know how hard treatment is, and all the twists and turns that come with that, but all you can do is take each day, one day at a time, and I know this is not easy, but we really don’t know how tomorrow may change.
Yes I understand that, once you have cancer life is never the same again. I’ve been living with it since 2009 and incurable since 2014, and it not only changed my life but my families as well. I can understand why people suffer with PTSD symptoms after cancer. I went through what I describe as a mourning process, for the life that I lost. It was very much like grief, and only felt better once I reached the final stage of acceptance.
I am sorry you have had miscommunication from the medical staff at the hospital, that does not help you through this process, and I can understand how frustrating this is for you.
I am so glad your husband is feeling well and hope he is enjoying his time away.
