Hi everyone,

In February my 38 year old husband was diagnosed with stage 3 testicular cancer which had spread to his lungs, liver and lymph nodes. He took part in a chemo trial  which really took it out of him. He did 4 cycles of BEP with only 1 weeks rest in between rather than 2 weeks. His tumour markers started at 1935, HCG 1025 and LDH 3000. After the 3rd round the the HCG and LDH had returned to normal but the AFP wasn’t quite. After the 4 cycles of BEP he then had 4 weekly Bleomycin bags. After the end of these his AFP had got to around 40 and then started to increase slowly again. 

After the chemo he continued to have weekly blood tests and the AFP then started to drop to about  25. The doctor told us the chemo can continue to work for weeks after in your body which I was unaware of. The CT scan showed that he still had tumours on his lungs but couldn’t tell if it was active cancer or scar tissue. 

5 weeks ago he had his right testicle removed and has developed fluid under the surgery site. 

When he had his initial scan it also showed he had blood clots on both lungs so just another thing to add to the list! 

We had our 3 monthly check up this week and the AFP level has now dropped to 15 so not far from normal and the CT scan backed up that the residual tumours are still shrinking but the blood clots are still the same size. 

My husband ankles and calves swell loads and also go bright red. He also struggles breathing when doing any form of exercise including fast walking. Has anyone else had these side effects 3 months after chemo? If so how long did they last? Also has anyone has tumours that showed Jist to be scar tissue? 

sorry for the long message!

  • Hi 

    Good that your husband’s consultant is pleased with how he’s doing.

    . Simon is seeing the oncology Consultant on Wednesday  who specialises in blood clots that have been induced by chemo and is hoping he changes his fragmin injections to tablets . 

    He’s still feeling slightly breathless even tho antibiotics have finished so not sure if it’s due to infection, the clot on his lung or scarring from the bleomycin?? 

    He doesn’t have any pain from his scar but there is a sort of numbness on the scar which I think is normal on a scar from surgery . 

    Sarah x

  • Hi, 

    Hole the appointment went well. Did you get an clues about his blood clots? 

    Chris seem to think his breathing is getting a bit better. Hope it continues. 

    Has he has his Covid jab? Chris has his 5th yesterday and is really ill. Not sure if it’s worth it but then again I don’t know if his immune system is normal now or still low. Do you have any clues if it stays low? 


  • Morning 

    Good to hear your husband’s breathing is improving . 

    The clot specialist consultant said that his lung clot could no longer be seen , but he wanted Simon to continue on the fragmin for a full 6 months as there is a risk they can re- occur . 

    He’s currently on a 3 week course of steroids for the breathless ( his oncology consultant says there is some inflammation on his lung probably caused from the bleomycin) , the steroids have helped a lot so far . Simon’s next CT scan and bloods are mid July so fingers crossed things continue to improve, he says he feels ready to go back to work ( he can work from home so this shouldn’t be so bad ) Is your husband managing to do more physical activity now ? 

    He had his 4th Covid booster last week, he was fine after it , I would have thought that your husband’s immunity was back to his normal levels by now , but I’m sure people have felt quite rough after the covid booster’s ( it’s hard to know what to do for the best , perhaps have a chat with his oncology specialist nurse for advise) 

    Take care

    Sarah x