DAB and Tram stop and start

Morning Joolskigirl

i understand how you feel it is a real blow, I have been off the tablets for two weeks now, and went in to see my consultant on Wednesday I have had every common side effect one after the other and they decided to lower the dose, but I was told that if I keep having side effects I may be taken off the treatment and just go back to three monthly scans.  There thinking is quality of life on a day to day basis and not doing more harm.  I hope your husband can return to his normal self and enjoy day to day living.  My family keep telling me that the cancer may have gone now and this is just a preventative treatment and I will be fine if I have to stop.  Hoping your husband is in this bracket and the scans will be fine. Think of you , take care.

Hi sorry to hear your husband has been taken off it, us it to fight the cancer or as a preventative treatment? Is immunotherapy an option? I know my oncologist said to start on D and T and keep immunotherapy as a back up incase it didn't suit me. I am in USA on a 3 week road trip which i never thought I'd do, have had occasions of extreme fatigue but made sure I've rested, one occasion of severe rigors and sickness at night, teeth chattering, wrapped in blankets, everyone else sweltering, thankfully stopped after 24 hrs. Nearly didn't take off as had pre booked seats by window, they changed plane and stuck us in middle. I have claustrophobia and panic attacks on top of everything else, think the air crew got worried as I was so worked up, eventually shuffled about and moved us! These drugs are a day to day trial I have realised and you can get side effects any time. Best wishes to your husband, we're all here for support x

Thank you Lurcher it does help to know we’re not the only ones in this boat! And I do try to focus on the positives. It’s tough isn’t it? You want the adjuvant treatment to reduce the chances of it returning, but if it gives you horrible side effects then you’ve got to balance that against the possible benefit you might get…. Hope you continue to stay well x 

Oh Jane B that sounds like a right trial! You are brave for going - we couldn’t get to the US as the travel insurance was so expensive (we wanted to ski for a week and they quoted £2,500!!). 

My husband was having Dab and Tram as a preventative measure (he’s 3B and has had one lymph node and a WLE). I asked about immunotherapy but they won’t give that or other treatment at this stage. I suppose they want to save it to use if it does come back which makes sense… 

I do hope you get to enjoy the rest of your trip - and thanks for taking the time to reply! Take care and keep well x 

If you need insurance for the future, then our experience was first one was £3800! That was it, weren't going! It has been planned for a year as daughter was at uni in NC. That quote was something like stay sure? My hubby then did some fishing about, Avanti £896! Paid it then friend who'd had cancer insurance for her husband recommended Insurancewith.  Loads of questions but it narrows risk right down , whereas others don't, this made it much cheaper,  £246!!! I am on adjuvant treatment having had a malignant melanoma last year and 2 nearby lymph nodes removed,  I then found a lump under same arm, it had spread to other lymph nodes so I had a total axillary clearance, cancer found in 15 out of 25 removed, scarey! I suppose as cancer hasn't spread further, I am 3b like your hubby, we are not seen as a great risk.  Hope this helps you to plan future holidays xx

Hi Jane

Thank you for putting so much information on holiday insurance, we have had a family holiday planned with all the grandkids for two years now. COVID put paid to the first two years and now I have stage 3 melanoma. To be honest I have not had the courage to look at insurance yet, as the holiday is in August. I really want to go as the holiday is all paid for, but I have had so many side effects that I have been afraid to ask the question of how much it would cost.  So thank you for giving the information you have I may now pluck up the courage to make an enquiry.  Stay well and safe best wishes. Xxx

Hi Lurcher please don't be afraid, I have gone through every emotion and was terrified to be so far from home. My oncologist reassured me tho and told me to stop the pulls for a few days at first times of any problems, then start again when feel OK. So far I have only stopped for one day as had rigors and sickness one night, you just need to pace yourself with plenty of rests. Good luck , Hope you manage your holiday xx

Hey Jane B thanks for that extra information. We had a similar experience and did actually manage to get away skiing to Austria in March in the end with Saga - premium came down to £300. We’ve since arranged three more overseas trips with Saga which were all reasonably priced. 

Lurcher it’s definitely worth ringing around - be prepared to spend a long time on the phone!! Some refused to insure my husband at all and others quoted thousands. The best we found were Saga and InsureWith as they understood cancer better and asked more questions. One tip is to try to not book your trip too far ahead - as the further it is away, the more expensive the premium will be (due to the risk of having to cancel if you get poorly). 

Let’s hope we all have fabulous holidays - think we all need something to look forward to! Take care and hope you both keep well. Julia x 

Joolskigirl and Jane b

Thank you so much for your reply’s, I will be riding around next week to see what I can do.  It is so nice to be able to communicate on this forum I don’t feel so much alone anymore.

Take care both of you and looking forward to holidays and doing something nice

Kind regards 

Claire xx

Hi Lurcher, Joolskigirl, Jane B

I have been reading your dab and tram messages with interest.

My partner has had 2 more recent trips to A& E after restarting dab and tram reduced dose. He is now home on antibiotics for infection and stopped treatment. He is very worried after his scan 2 months ago, showed that his remaining tumour in a chest lymph gland had starting growning slightly, and he has not been able to stay continuously on his treatment.

He is seeing his consultant Monday to decide a plan going forward. With many hospitalisations and infections he has lost 12kg in weight and I am worried whether he could tolerate going back onto a further reduced dose of dab and tram, or how long he can continue without any treatment. 

He would love to get away, and the information posted about insurance quotes is very interesting. I think for the immediate future we will try a few days away in this country.

Take care everyone and stay positive.x