Recently diagnosed

Hi Cezza.  i am having chemo every two weeks for 6 months.  Got to have a pet scan after 4 treatments and then see consultant again so fingers crossed.  He said I may need radiotherapy as I have a bulky mass but they want to avoid this given my age so I am hoping chemo does the trick.  I have really thick hair so will see what happens but at the minute not to bothered about this but it may change as it starts to fall out.

Sounds like you are near towards the end of your treatment, fingers crossed it all goes well for you.  x

Hi Krazy;

Like you I was origionally booked in for 6 months/cycles of the ABVD, and also the PET after the first 2 cycles (four infusions); my intermediate PET, the one then, showed basically I was in 'complete remission'- I had another two cycles (so four cycles/months of ABVD in total), and then had 3 weeks radiotherapy- Actually, as I recall, everyone in this  thread, had really good intermediate PET scans, so ... here's hoping that's a trend that continues for you!- I may have even been able to skip the radiotherapy, but I had to drop one of the chemo drugs, the Vinblastine, as I got bad side affects from it, considered too severe as it was dammaging my nerves and i started  loosing feeling in my fingers/hands; if it hadn't have been for dropping one of the four dugs, I doubt they'd have pressed me so hard, to go for the radiotherapy...

having said which, the radiotherapy really was a doddle compaired to the chemo...

Now I'm seemingly just dealing with the shock, mainly, of finding 'normality' post-treatment, well, all coming back to me, at once! - Have to keep reminding myself I'm not exactly fully recovered yet!

Here's hoping your treatment continues well; try not to over-anticipate the worse, with side affects, you may be plesently supprised afterall...

Krazy - I have seven weeks left, and counting! It does go fast believe it or not!

Most have interim Pet after 2B, hopefully (like most on here) things will be clean for you and the rest of the treatment will just mop up any stray cells!!

Good luck with your treatment. Any advise, please ask!!! 

Hi, the anti-gout meds are Allopurinol, if they give you them please do take them, gout ( it's a gout-like problem with the initial breaking down of the cancer) can be REALLY painful! 

And yes, act fast with risk of constipation, it can be nasty. But occasionally people react the opposite way, so after chemo 1you really need to keep a diary or journal to refer to for each time, and keep it going. 

Hugs to you all xxx

Hi moomy. The hospital never gave me Allopurinol only the sickness tablets not sure why though. I normally take the kids to their swimming lessons on a Saturday but not sure if I can able to do this now does anyone know?

Hi Krazy, 

normally you are ok for the first few days after chemo, white cell levels usually begin to drop as you are feeling better over the start of the second week after chemo. Depending on how low they drop and how easily your white cells recover, you are then more or less at substantial risk of infection. So mixing with a whole big gang of kids isn't then a great idea, with their propensity for coughs and colds and worse! 

If it's just taking them to leave them with the instructor and not getting in contact with lots of other kids, then you may well be fine. However, if it means you, too, getting in the pool, then I would say a definite no. 

If in any doubt about any part of this, phone your chemo team and ask. It might also be useful to find out if they forgot to give you the Allopurinol? 

Hugs xxx

Hi moomy, thanks for your reply. I going to get someone else to take them and then discuss it with the nurse next week to be on the safe side. I don't go in the pool but it is extremely busy with lots of kids and parents. Would like to take them as so bored but not worth the risk. I've started my diary which I am finding useful. 

Boredom is awful, bless you! But a diary is a great idea! You might just also find you get creative around the home, cooking, cake making, and craft work? At least when you feel well enough, that is! 

Sending hugs xxx

Allopurinol... Ahh. Nope never had any of that either; I'm guessing that explains the worse pain side affect I had, which was the arthritic joints and all the muscle joint cramp and pains...

Just had a phonecall from patient leiason, who I wrote to, yesterday, seems they're going to contact people in oncology/hematology and radiotherapy for me; To be honest, I didn't quite fully get what they were saying; a couple of times, I think he lazily mixed up terminology, but I think he got the gist of the problem, which is useful. Also, looks like I may have another appointment at the start of September, again which I've not been sent any information or appointment letter for; that may actually  be the appointment I want, with an actual oncologist/hematologist rather than a radiologist- confusion seems to be it is assumed I've finished with chemo, but radiotherapy needs folow up; whereas I've still not had the follow up from the chemotherapy and have no point of contact with anyone at the hospital. Well, hope they get something done soon, or I might have just vanished out of the country by the time they decide to talk to me... - hmm, am I even ment to be 'allowed' to just fly off out of the country at the moment? Its stuff like that I've not got a clue about... - plus trying to find out what actual infection risk   I'm at, now, post-treatment, and whether I'm correct, just ignoring small scratchees, cuts etc, that I regularly end up with, like the other day I walked into something and gashed my foot, I just ignored it, of course, like I'd regularly do, having had no advice to do otherwise...
Pals said they'd contact hematology and oncology for me though, with the unaddressed points like that, plus residual chemo sideaffects, some of which are, well... kinda important I feel, even if they were brushed  asides previously by the oncology Dr I saw in the chemo clinicks...

Pushing on today, and fighting through the fatigue, and not letting it control me. already got bed stripped, and bedding into wash, matress turned, and have started housework,  after morning medication and some meditation first thing with coffee and then tea. Lunch/breakfast eaten (trying to break the need for food to accompany ever dose of drugs, as its so not helping me lose the weight I put on during chemo!).

Now to sit down and finally tackle this job application properly, concentration on any task for a long period is still so difficult.

The journal idea is a brillient one!; wish I'd started such a thing, at the beginning of my chemo, to determine how I was doing and if there were patturns etc, like to the constapation issue... - easier to spot if you've actually recorded it, especially if you start getting any chemo brain, and then can't recall/remember clearly...

Hope everyone is doing OK.

Hi guys,

Quick check in, I didn't get the allopurinol either, perhaps it depends on the hospital, everyone's regime seems slightly different. 

Krazy, hope you are doing ok? I found getting out and about as much as possible helped keep me sane during treatment. I took myself off for walks and coffee outside cafes also badgered friends to do stuff! Keep busy when you feel well. How old are your children?

Mark, I know my consultant was really encouraging about me getting away, he even called me on the Friday before we came wanting me to pick up steroids for the lung damage before I went away and he made sure I saw his registrar and will see him as soon as I get back. There was no suggestion that I shouldn't go was just told to get to a Dr if things got any worse. I think this holiday is the best thing we could have done as a family.it is so healing. Get something booked mate and have fun! X

hope everyone is ok, did you get the sunshine I sent? Phil, promise I didn't dance! How is the dizziness? Thinking about you for results on Monday xx