Hi - my husband had testicular cancer 13 years ago and had an orchidectomy , he was followed up with monitoring his bloods and regular scans for five years. He was then discharged. He found an abnormality in his other testicle last September which resulted in another orchidectomy, unfortunately the PET scan showed activity in lymph nodes in his abdomen and a mass on his lung which was spread from the testicular cancer . He has just finished 3 cycles of BEP , the AFP tumour marker came down to 6 after the second cycle but was told yesterday that it has risen to 33 so he needs 4 cycles of TIP . We are both finding this news very hard to absorb . I was wondering if there is anyone who has had similar experience who could offer us any reassurance.
Hi Mrs and welcome to the online community which I hope you'll find is an informative and supportive place to be.
I noticed that your post hadn't had any replies yet so responding to you will 'bump' it back to the top of the discussion list.
If you haven't tried the search function already you could type 'TIP' into it to see if there are any previous posts which mention this. You could then respond to any of the more recent posters if you think they can help you further.
x
Hi
Sorry to hear that your husband needs to continue treatment and that the cancer has reappeared.
Similar to your husband I was diagnosed with testicular cancer last year, mine is a little unusual inthat the tumour appeared in the centre of my chest . I completed CBOP- then 4 cycles of BEP in November. Surgery removed 90% of what was left but unfortunately my AFP has risen to 60 so they have asked me to undertake 4 cycles of TIP,. Like you I'm a little shaken after going through all the Chemo and surgery. However, TIP appears to be very effective and is recognised treatment for reoccurrence. Not sure how old your husband is but I'm 58 and found the BEP a challenge, and I'm now trying to get my self as fit as possible before I start TIP in April so I can get through the process and recover over the summer months
I wish you all the very best and keep your spirits up, remember testicular cancer is one of the most treatable cancers and very susceptible too chemotherapy.
Best wishes
Hi
Thankyou for replying, I’m sorry your having to go through more treatment too . Like you my husband found the 3 cycles of BEP very tough and was admitted to hospital a couple of times during his treatment. He is 49yrs and relatively fit for his age . His consultant gave him a couple of weeks off for him to build himself back up which he has managed to do . He started the TIP treatment on Wednesday, had to stay overnight Wednesday as they gave him intravenous medication over 8 hrs to help combat bladder problems that this chemo can cause , but he had it in tablet form yesterday so was able to come home . Fingers crossed that he is able to tolerate TIP better than BEP .
Wishing you all the best with your treatment and are soon on the road to recovery. , it helps to talk to someone who is going through a similar experience.
Hi
I managed to tolerate the BEP , just, lots of nausea, mouth ulcers, weight loss and chronic fatigue and like you I'm hoping the TIP is a little easier. It's a tuff gig chemo but can be very effective. As a guide the course of CBOP-BEP I undertook brought my AFP from 20,600 to 17 over 4 months, not quite there but pretty close and I'm hoping the TIP is as effective.
My only concern is neuropathy as I still have tingling hands and feet after the BEP and I've been told the TIP will probably make it worse and could be permanent but as we all know the options are not worth considering
I wish you and your husband a quick and effective recovery and I hope the TIP turns out to be easier to tolerate
Best wishes
Hi Mrs
I just wanted to ask now your husband is coping with the TIP chemo, I have started my 4 cycles and after 2 days I have seen no significant issues, the regime is onerous and I'm getting little if any sleep but if the Chemo works ill be happy. I'm hopeful the fatigue etc doesn't kick in till the 3rd cycle but we'll see how things go.
I wish you the very best and let your husband know he is not alone in going through this process and if sharing helps Im happy to listen
Regards
John
Hi John
Thankyou for asking.
My husband Simon had his first cycle of TIP starting on 9th March - he found the first couple of days quite hard going in that there was a lot of fluids being infused , especially the first 24hrs when he had to have the MESNA medication intravenously following the chemo. He stayed in hospital the first night due to the length of the infusions , but was able to come home the following 4 days after the chemo and take the MESNA orally. Overall the TIP did not seem to affect him as badly as the BEP , he was able to eat and drink quite normally and felt able to go out and about 5 days after completing his 1st cycle. He did have a sleep for about 3hrs each day for 3-4 days after the treatment but it’s been nice having 16 days off between cycles .
I do hope you find the TIP easier than the BEP , best wishes .
Sarah
Hi Sarah
Thanks for the quick reply
So glad to hear Simon is coping with TIP better than BEP, like you I think the 16 days break will make a huge difference and give us time to recover a little before the next bout. Sleeping for a few hours a day can only be a good thing and helping recovery. My understanding is that TIP can often stabilise AFP when BEP fails so with any luck it'll work for Simon and hopefully for me . My AFP was stable for 5 months after BEP but then suddenly shot up and hence the need for TIP
All the very best as the weather improves I'm sure we can all look forward to some days in the sun
John
Hi Sarah
Hope Simon is coping well with the TIP, I'm sure he'll start the second cycle soon.
I'm just finishing first hospital stay, the option of taking MESNA orally isn't avaliable so it added 8 hours to each infusion meaning I'm in for the full five days. However I don't feel too bad so far and hopefully pick up as the week progresses. I'm in the North of Scotland and 40 miles from the hospital so staying in for the 5 days is probably the easiest option
My oncologist also mentioned High Dose Chemo as an option but thought my age maybe against me (57) as its tuff going. However he did mention that radiotherapy was something to consider if we can see some progress with TIP, my tumer is in a single location but inoperable so if we can shrink it and stabilise it radiotherapy could help and hopefully give me some time.
Wishing you and Simon the very best of luck
Regards
John
Hi John
Glad to hear you are tolerating your first cycle of TIP , I can imagine it’s been quite hard going having to have the MESNA intravenously every day . Sounds like it was the best option for you to stay in hospital as you have to travel so far - we are quite lucky as our cancer centre is only 20mins drive away from our home in South Wales , so it’s quite easy for me to drop and pick Simon up each day .
Simons TIP has been put on hold at the moment as they’ve found one of his liver blood tests is still elevated following the BEP , and they’re wondering whether this could be linked to his sudden rise in his AFP , so he is having closely monitored blood tests and ultrasound scans for the next month.
Hope you are feeling ok and not experiencing too many effects from the chemo and have time to re- corporate over the next couple of weeks before your next cycle
Best Wishes
Sarah
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