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 there, I'm so sorry to hear what your husband (and yourself/family) are going through. I have just finished one round of BEP, that was tough enough. I can't offer any advice on the side effects etc as I have only had adjuvant chemotherapy, hopefully that will be all I require. Hopefully someone else will be able to offer advice who has had BEP and is a little further along the line. All the best to you.

  • Hi Katie. 

    Your experience sounds very similar to where we are embarking. 

    How is your husband doing? Did you find out more about the breathlessness and blood clots? 

  • Hi, 

    sorry for the delay in replying. My husband has finished treatment (a year ago today) and we are now at 3 monthly check ups. He still has tumours on his lungs (from when it spread) but the consultant is hoping they are dead and more scar tissue. It’s a waiting game because they have said they can become active within the first 2 years. He is still breathless and his lower legs swell but the breathing is a lot better than before. We’ve managed to walk 8 miles in one day once but if he's tired his mobility is limited. The consultant said some of it could be from the chemo still because it can show affects for over a year he said, also could be a lasting effect from it or it could be the blood clots still. On his last scan it showed he still had clots (they were huge) so hoping as the continue to shrink it continues to improve. Hope things are going well with your husband. 

  • Hi - glad to hear that your husband seems to be getting stronger. My husband had his second testicle removed in September 2021 with spread to his lung , followed by 3 cycles of BEP chemo . During his treatment he developed a DVT in his leg and a clot on his lung ( he’s still on fragmin injections daily) . His AFP markers initially came down to 6 but very soon after started to rise again . His consultant leased with a team in London who suggested that it was his abnormal liver bloods( caused from the chemo)  causing the rise his AFP so he is having them monitored closely at the moment. 
    He too is intermittently very breathless but some days he can walk with no breathlessness, is this how your husband has been? The area on his lung has halved in size following the 3 cycles of BEP ,  not sure what the plan is for this at the moment possibly surgery or radiotherapy- how do they monitor if it’s active or not ? 
    Sorry for the long post and bombarding you with questions but your husband’s experience sounds similar to what my husband is going through at the moment .

    Thank you Sarah 

  • Hello. I am in a similar position. Husband had testicle removed in late November, and has done 3 cycles of chemo. It has been brutal. Follow up scan showed good shrinkage of 3 tumours and they are cystic, blood markers were good, so believed to be free of active cancer. However scan also showed clot on lung, so been on fragmin since late March. As well as clot new nodule (not on original ct scan from pre-chemo), so last week he had a lung biopsy to determine what the nodule is....scar tissue or more sinister. Currently awaiting histology results. He has had terrible breathlessness, and even ended up back in hospital for a few days due to light headedness etc. Unbelievably he was suffering from chronic constipation, which was causing the BP drop, and light headedness. Still getting breathless quite easily, and tbh generally struggling. We need the histology ASAP as the stomach tumour is severely impacting him. Once that back we think next steps will be either more chemo (if new nodule tests as cancer), or move forward with am operation to remove the remaining tumours. 

  • Hi - sorry to hear your husband is not feeling too good at the moment. Did he have BEP chemo ? , as I understand the bleomycin can cause scarring on the lungs and possibly breathing difficulties. The clot on the lung could also be a reason for increased breathlessness. 
    The waiting for results is the worst part isn’t it , once you know what it is you can get on and deal with it . 
    Simon my husband is seeing his consultant tomorrow so we will discuss the breathlessness  then . Hope you have the biopsy results soon , have they told you how long they’ll be ? 

    Take care Sarah 

  • Hi, 

    with general walking my husband is generally ok but if there’s an incline or steps he really struggles. He also struggles bending down and doing things like house work. If he’s tired he struggles doing even the basic things and will have to lay down for a while. 

    For monitoring they just do blood tests 3 months now and CT scan every 6 months. Initially after treatment blood tests were weekly, then 2 weeks, then monthly and now 3 months. We are seeing the consultant tomorrow for his latest review so keeping my fingers crossed. The GP surgery have told us the consultant has requested he goes back to 2 month check ups but no idea why yet. 

    He’s on 10mg Apixiban a day for the blood clots. No idea how long it takes for the clots to go. He’s just been send for his review of the medication because he’s been on it a year now. They need to weigh him but last time they checked the right amount he needed he was 4 stone lighter. He did deltaparin injections for 6 months and they were killers for his stomach. The amount of bruises and swelling were awful. 

    Hope things start to pick up for your husband soon and no worries with all the questions. Happy to help. 

  • Hopefully it turns out it’s not cancer, the waiting game is definitely an awful time. Hopefully you aren’t waiting too long. 

    When my husband was on chemo he had bad constipation and he said that was the worst thing that happened in that time for pain. 

    Blood clots can definitely be one of the main causes for breathless according to our consultant. 

    fingers crossed it all works out ok for you. 

  • Hi - thanks for replying and answering all my questions. You keep thinking of more questions when you’ve come away from seeing the consultant don’t you . 
    Simon had a chest X-ray at his last appointment which showed a possible chest infection so he’s had a course of antibiotics which seem to have helped a little but like your husband he still becomes breathless on stairs or on an incline. - maybe it’s something that stays as a result of the bleomycin? 
    Simon is seeing the specialist clot consultant on Wednesday and is hoping he’s going to stop the fragmin injections, as they come with their own side effects eg. feeling cold, bruising. 
    Hope your husband’s review went ok are all his tumour markers normal now ? 

    Take care Sarah 

  • Hi, 

    The review with the consultant went well. All his tumour markers are normal and also his blood for his blood thinners were so the consultant was happy. In 3 months time he wants to do a X-ray on his chest and bloods again. 

    The injections are awful, Chris was black and blue from them and also very swollen. He was so relieved what he went to tablets. 

    Hope they manage to get the infection sorted quickly. The consultant told us that Bleomycin can cause scarring but the clots can also cause issues with breathing so we won’t know how good his breathing is until the clots have totally gone. Thinking back to this time last year he’s so so much better. 

    Does your husband suffer with pain and sensation issues around the surgery scar area?