I was wondering what kind of side effects you all have experienced after finishing your treatment...both new ones and those that seem to stick around.

I am coming up on 2 1/2 months since the end of my maintenance treatment, and I still have limited energy. I also developed a really itchy, rash-type thing on my face for a while, which got better but still comes and goes. My doctor told me it was just acne, but it wasn't, and I've heard other survivors talk about something exactly the same.

It seems that down in Australia you recieve a different treatment protocol than over here in Canada, so I'm interested in whether or not it still produces the same side effects.

Hi Peter,

Sorry to hear about the ongoing issues. As if having cancer wasn’t bad enough for you.

I’m still undergoing treatment for ALL (Fralle protocol) and have been on that since June 2008. I just finished my first maintenance phase yesterday with 2 weeks of radiotherapy – my hair is now falling out as a consequence of that, but I’m balding anyway so at least I won’t have to shave for a while. Had a couple of little headaches and a bit of redness but that was about it from the radio. I’m about to go back in to hospital for my final round of heavy chemo then start about an 18 month maintenance period.

I have had some issues with my skin (mostly acne not rashes) from the previous chemo and it is quite a bit worse with the heavier doses. Even with the lighter consolidation and maintenance phases my skin has not been clear but it’s mostly around my face, head and upper arms. Exfoliating helps. I’ve not had any issues with energy levels unless I’m actually feeling ill from heavy treatment.

Have you seen a dermatologist for the rash?

It would be interesting to see what types of chemo drugs you had during your treatment and how they differed to the ones in my protocol for example.

Hi Lyndon,

I haven't bothered to go to a dermatologist, since my skin issues have gotten much better. I saw my doctor a couple of weeks ago and he confirmed that it may have been my immune system over-reacting as it builds up again. This probably also explains why initially I would get itchy if I put anything, including soap, on my skin.

I was on the Dana Farber Protocol, which apparently is relatively new but incredibly successful. I can't remember all of the drugs involved in the first, intensive chemo phase, but it lasted about a month and got me into remission. After that I was released from hospital, given two weeks of brain radiation and LP's, and started a 6 month chemo phase. This involved conitnuous 3 week cycles, including 5 days of steriods (dexamethasone) and 14 days of 6-Mercapturpurine orally, weekly injections of methyltrexate, and IV injections of Vinchristine (later switched to Vinblastine because it made my feet go numb) and l'asparaginase every week (or maybe every 3 weeks). I had to stop the l'aspariginase, because it gave me an attack of pancreatitis, a seizure, and generally messed me up pretty bad, which apparently is not uncommon. I may have also recieved some other drugs, it's hard to remember which ones were part of which phase...and of course a lot of blood transfusions, and periodic LP's. The final maintenance phase was also 18 months, and was similar except with lower doses of most of the drugs, and no l'aspariginase. If my treatment was anything like yours, you will find this last phase much easier, especially near the end.

Best of Luck,
Peter

Thanks for that detailed message Peter, and great to hear your skins clearing up.

It sounds as though our protocols are fairly similar as I recognise the names of all those chemotherapies. I started with an induction phase followed by consolidation, delayed intensification 1, 1st maintenance, delayed intensification 2, then finishing with the 18 month maintenance. It's been 7 months now and I'm about to commence delayed intensification 2.

The induction and intensification phases have been the toughest by far and I'm looking forward to the final maintenance phase as I know the hard stuff will be behind me when that starts. I felt completely normal throughout the 1st maintenance phase so I hope that continues to be the case in a couple of month’s time when I've recovered some health.

Thanks again, Lyndon

I wasn’t sure where to post this so thought I would stick it on the end of my last submission.

I would like to share my most recent hospital experience with you, which for some reason has left me feeling and coping a lot better than then last time I returned home from one of the intensification phases of chemo.

Since the previous intensification round in October last year, which left me in the worst physical and mental condition I had ever experienced, I had a two month easier and much less intense maintenance period that allowed me a good recovery and respite over the Christmas and new year period.

I returned home from the two week stay mid last week so am expected to have a few more of the usual side effects but generally my symptoms are holding steady, which is a great sign to this point compared to last time. I’ve had little or no nausea, only about 4-5 kgs of weight loss and my energy levels have been surprisingly high with quite a large appetite that I have been succumbing to every whim.

So, aside from expecting to go through living hell again I was able to recognise my symptoms a lot earlier this time and attempt to address them. I might also add that I think this did also have a lot to do with the duration I had between the two intensification phases and how I prepared physically, mentally, nutritionally, and also due to the fact my bloods and marrow were probably in much better condition. I felt I was able to use my knowledge of how the dexamethasone affected my appetite and diet and how it made me feel as though I was needing to eat even if I had only eaten a few hours earlier. So I went with it – and still am. When I’m on those things and my taste isn’t affected by the chemo no food is safe and they really help to put the kegs back on. My appetite is still quite fussy now but have found a huge joy in noodle type dishes such as pad Thai, satays, laksa, pastas, chicken wraps and similar carb loaded meals. Admittedly there has been a little fast food in there too as the salt has been heaven on the pallet – but hey it’s a means to short end that is a huge pay off to get through my toughest round of chemo compared to that of last time.

I guess for myself I’ve identified that keeping food in the system and loads of calories in there helped me keep the nausea away. I thought I attempted this last time but it didn’t work as well and I hadn’t identified my preferred foods specifically. Or maybe I didn’t try hard enough. Whatever it was, and a lot of you out there may be aware of this and I may have just reinvented the wheel but I feel as though I’ve somewhat cheated the system this time. In particular when my doctors say they’re amazed at how I’m doing considering the amount of drugs they put in me over the two weeks. Maybe there’s an answer in the amount of MSG I consumed..? Probably wasn’t really that much and not recommended.

I wish I knew 10 months ago when I commenced chemo what foods I found I could actually enjoy and stopped at nothing to get them. My experience and reaction this time has been completely unexpected. Let’s just hope I can keep those infections away over the next few weeks as my cells deplete a little further.

If anyone else has had any unexpected or surprising stories of how the treatment didn’t affect them as they thought it would be great to know what you did that may have been different and how you addressed your identified symptoms if you were faced with multiple phases of intense chemo.

Thanks, Lyndon