Watchful waiting

Hi

That is a tough choice and I feel for you. I have been in that position twice.

First was a few years back when the cancer recurred and then spread. The offer was palliative chemo when I had symptoms. At the time, I had yet to come to terms with being labelled incurable  and I was too busy dying of cancer to enjoy the living with it free from symptoms. In the end I didn’t take up the palliative chemo as I was able to get onto a biological therapy that kept the cancer stable for 15 months.

We got to the end of that period of stability and I entered another watch and wait but it lasted only a couple of months before a tumour blocked my ureter. My consultant felt we needed to act quickly so I went straight into six months of chemo. Since then, I’ve pretty much gone from one treatment to the next with 4-6 weeks wash out between them. Each time I end a treatment the cancer has progressed and it’s been felt to be too risky to let the foot off the gas. 

In all honesty, I have to say this. What I wouldn’t give for a treatment free break. Not going to hospital every week or fortnight (I clocked up three full weeks with no hospital visit in 2019). Not feeling poison flowing through my veins. 

I am not surprised you feel fed up. I would too. I guess one question is whether you would be able to enjoy a couple of months off or whether it would cause you more anxiety than it’s worth? I know what my answer would be. 

xxx

Hi,  

I've had a somewhat similar journey.  Diagnosed with aggressive TNBC in December 17. I went from having  just a small lump , no lymph node involvement, to a lump almost twice the size, axillary and IMC nodes all involved, and possible involvement of supraclavicular nodes & mediastinal area within a fortnight. 

I had EC-T chemo, plus Carboplatin,  but the beast continued to spread. Mastectomy and axillary node clearance, followed by radiotherapy took care of some of it, but the IMC/mediastinal nodes have remained active.

My oncologist suggested I take a break then, but I declined, (I wanted to hit the cancer with everything I could), and so I had 6 months of Capecitabine. Again, the cancer spread. A plasma biopsy straight after i finished the course of Capecitabine revealed it was circulating in my bloodstream. As the docs said, it was looking for an organ to settle in.

Once again, i was offered a break from treatment, and decided against it. I just didn't want to stop when none if the treatments I'd had so far had worked at all.

Next step was to join a clinical trial for immunotherapy. That didn't work either, and by last August I had mets in both lungs. In September, I had a bad reaction to the immunotherapy, and a 9 week treatment break was enforced. We tried again in November, but thus time the reaction was immediate., and I was off the trial. So I finally had the break, but it wasn't my choice.

Fast forward to January this year, and the autoimmune reaction was stable, tho the cancer was growing. My team had identified another trial for which I was suitable,  and I was ready to go. A week before my first treatment, I collapsed with a new & more serious reaction. This one is ongoing and unexplained, &  I've been in hospital more than I've been home ever since.

This time around, I had decided to re-evaluate my participation in the trial before the team suggested it because the circumstances are very different this time. None of the previous treatments caused any damage that might be permanent, and certainly none of them led to concerns about my heart, lungs and kidneys. I need to rethink the wisdom of trying a drug so new it doesn't even have a name yet. I'll be having a staging scan around Easter, and we'll decide on any further treatment then. 

Long story short, as long as I was dealing with manageable side effects that stopped when treatment did, and I felt well enough, I was happy to keep going in search of something that would work. Now I'm very unwell, and nobody knows just what is causing it. The risks appear much greater, so I'm happier taking the time to find out more about the new drug.

Sorry for rambling on, but I wanted to explain why I went from "all systems go, let's kill this bastard" to "hang on a minute, I need to think about thjs". Hope it helps.

Hello Daisydoo38

I understand. I have already decided to have a break after the next round of chemo. It's not like you are giving up, you are giving your body a rest and also time - the endless trips to hospital are tiring and make it difficult to go away or make plans.

Take care, xx

Thanks for the reply   I have been very much let's throw everything at it and find the right one but they are saying there will be a break in treatment so it's deciding when is best and that I only have a couple of choices left.  Looking at the trials list I don't qualify for any of them I have either had too much treatment or the types that mean u can't go on it.

Just feeling fed up that nothing seems to work and now we have to make this sort of decision.  I guess they wouldn't offer it if they didn't think it was a good idea

Morning Daisydoo

I'm in a similar situation. Chemo is working 4 some bits (liver & bones) but this regime never seems 2 have worked 4 the breast, lungs & lymph. Need 2 decide if we stop what looks like the final available treatment.

I jumped from one regime 2 another without much of a rest between any - my call as I wanted 2 fight it & get as much time as possible. 

Good luck with wotever u decide - ur call af the end of the day 

Ciao

WB xx