Forum Discussion
dougal
8 years agoMember
Waiting for chemo!!
Hi Everyone, I am new to this network. My name is Debbie and I was diagnosed with Invasive ductal carcinoma, grade 2, HER positive amplified, oestrogen and progesterone receptor positive, tumour 23mm, on 5th July, so after a life changing shock, out of the blue as no symptoms, at 51 went for my first ever mammogram. Thank god I did as I'm one of those people that thinks nothing will ever happen to! as I live a healthy life, breast fed both my children, never smoked etc. Anyway,how wrong I was, thinking I was so healthy.
I have since had a right side masectomy on 13th July, but now feeling very stressed, as am still waiting for an appointment with the oncologist. There seems to be an issue after having surgery at Royal Perth hospital I am now being told I'm suddenly out of catchment area for treatment, although not told this when I saw surgeon. I cant believe how stressful this has become waiting for chemo to start and not knowing when. I would just like to ask everyone out there who has had chemo, how long after surgery they commenced it as I'm worried the longer I wait the less effective treatment will be. Any other advise also would be greatly appreciated. Love to hear from anyone out there.
I have since had a right side masectomy on 13th July, but now feeling very stressed, as am still waiting for an appointment with the oncologist. There seems to be an issue after having surgery at Royal Perth hospital I am now being told I'm suddenly out of catchment area for treatment, although not told this when I saw surgeon. I cant believe how stressful this has become waiting for chemo to start and not knowing when. I would just like to ask everyone out there who has had chemo, how long after surgery they commenced it as I'm worried the longer I wait the less effective treatment will be. Any other advise also would be greatly appreciated. Love to hear from anyone out there.
63 Replies
- kmakmMember@Emim I was also quite affected by Rachael's death this week. An inspiring woman. Just so sad, especially for her little boy.
Liz O'Riordan's blog was my bible before I found this forum. I got onto it via my BS's website. So good to read about a doctor's experience of BC. You can just rely on her background for a true and scientific reflection.
Big hug and def get out there for a leg stretcher today. K xox - EmimMemberMy appointment with the oncologist is actually next Tuesday (chemobrain). At least I thought it was earlier than it was, rather than later! Good to know that you also got the rash @kmakm and @"Kiwi Angel". I seemed to it after being in the sun, but perhaps it was a co-incidence. I don't want to be avoiding the sun unnecessarily. I could also have had a reaction to the suncream I used, which was Cancer Council spray, but still there might be something more suitable. It is currently a lovely day here in Canberra and I think I will go for a walk before that changes. I want to enjoy the next week as much as I can before cycle 2.
I also had a read through Liz O'Riordan's blog, and enjoyed her honest, informative and down to earth writing style. I liked reading about the amount of exercise she did when she could, as I want to be more active.
I also read about Rachael Bland a BBC newsreader, a lovely soul who died earlier this week at 40. Rachael blogged about her cancer experience on Big C Little Me. I felt so sad and as though I was losing a friend when I read her last blog that she was off her last trial due to the cancer not responding. Rachael also hosted a great podcast "You me and the big C" with two other British women with stage 4 cancer. A very informative podcast that discusses cancer with great humour and camaraderie. - Harvey1903MemberHi four days! @dougal I'm also day 8. Temp has been hovering around 37.9 for the last four days. Went to hospital only to lay on a plastic bed, with plastic pillow, someone with a virus next door no blanket and extremely stale sandwiches. So not in a hurry to go back. I'm seeing breast care nurse today but have not had a good day yet. Lots of stomach pain like I've had a 10 course meal. Only eating very small amounts and have lost 2 kilos in one week.
They also cannot put a cannula in my left arm. I have to go through radiology via oncology (so I'm an inpatient and don't pay) and they put it in with the help of ultrasound. Fingers and toes crossed they don't use my foot!
@Emim no injections for me either nothing mentioned. Go back to oncologist just before round 2 Sept 19th.
Take care. J - SarnicadMember@Emim I had bone pain with the injection as well. I was told start at panadol then go to panadol osteo and then see. Fortunately panadol worked for me so I didn’t have to raid hubby’s panadol osteo
@dougal I was only given the injection after the first round was a bit of a disaster with my white count. I’m assuming it wii now be part of my protocol - Kiwi_AngelMember@Emim I had the neulasta injection and got bad bone pain. As my oncologist explained to me it’s good as the marrow if producing the white blood cells which is why the big bones ache. I used panadol the first time which did nothing - the next 2 times I used panadine forte which was as quite good and the last cycle was endone - definitely ask your oncologist. I go the rash too - I just took an antihistamine for 2 or 3 days after chemo and they kept it at bay. xoxoox
- kmakmMemberHi @dougal. Sorry you had this drama; really scary. I'm glad you're feeling better now. I was never offered the neulasta injection with my TC. It seems to be very individual depending on your oncologist. I trust there won't be any issue next time!
I had a mixed bag with my cannulas. My second chemo was. Nightmare with a nurse spending five minutes wiggling the needle round under my skin trying to find the vein. It was agony! She also didn't read my chart properly and failed to give me my pain meds in a timely fashion. I made it known that I didn't want to have her again, and I didn't. The NUM told me the nurse had been doing it for 12 years...
Interesting about pain on chemo. I hadn't heard about that either.
@Emim I was very rashy with chemo, all red bumps and spots round my neck and on my chest. Itchy. But it didn't seem to depend on the sun.
My surgeon told me the same thing re radiation therapy & mastectomy. Reassuring. K xox - EmimMemberI'm so sorry to read about your experience @dougal. That is a very high temperature and must have been very scary for you. At my hospital it is standard to be given a neulasta injection within 24 hours of each cycle of chemo. It is disappointing that was not offered to you, with such negative consequences.
I got really bad bone bad in my hips, thighs and back from the neulasta injection, or perhaps a side effect from the TC chemo, which lasted for about 4 days. I took panadol, which didn't help. I am seeing my oncologist tomorrow, so will ask if there is anything else I can take. I have seen in other threads that claratyne might help with the bone pain.
Otherwise, I haven't had such a bad run. I am very sensitive to the sun and broke out in a rash on my face and chest after being in the sun for a few minutes on Sunday, it almost looked like measles. I felt a bit like a vampire. I have avoided the sun since - which hasn't been hard as it has been mostly grey and raining. I also ate a strawberry, which was a big mistake as I had an immediate allergic reaction with getting lots of little bumps in my mouth. I also suddenly have really sensitive teeth and can't handle ice.
Today was the first day I finally felt normal as I have been having daily headaches until today. No hair loss yet, but time will tell.
I had my first appointment with my radiation oncologist earlier this week and will have a bit over 6 weeks' of radiation after chemo ends - with the tail end over the Christmas new year period. Some women have shorter periods of radiation therapy but I was told that as I have over a D cup that I need longer. This time will pass... My radiation oncologist was very clear that my likelihood of recurrence after radiation therapy is the same as if I had a mastectomy, which was consistent with what my surgeon said, so I found that reassuring. - AfraserMemberA small beef in the scheme of things but many nurses are no good with canulas and have to get doctors or anaesthetists to do it. My day oncology nurses were good to brilliant, which made it harder to understand why general nurses in the same hospital were not good at all. I too have a lymphoedemic arm, so roaming up and down puncturing my useable arm was not a fabulous idea. It wasn't so much painful as pointless and I ended up looking like a dot painting! I am glad you have had no infection (I had a few of those but all were ultimately caused by a seroma, not loss of white blood cells) but no, you don't need any of the attendant misery of high temperatures and being in hospital. Here's hoping it's a one off!
- dougalMemberSo day 8 after first chemo of TCH I felt extreme tiredness and shivery, temperature rose to 39.4 by time I got to emergency! ended up 4 nights in hospital on antibiotics as my white blood cells dropped to zero!! very scary. Had so many tests but no infection found, one of the doctors said just having no white blood cells could have caused very high temperature. Have to say I'm fed up as if I'd been given the nuelasta injection day after chemo could probably have avoided this happening, but when I asked for it was told to wait and see if I need it next time as it's expensive!!! well now ended up costing a lot more as ended up with hospital stay, injections, antibiotics, blood thinning injections!!!! Also a quick question, does anyone else have problems with having canula put in. omg what a nightmare, can only use left arm because of risk of lymphodema on right side. they had to get senior doctor to try using help of ultrasound and still couldn't get it in. Ended up with it on top of my foot! the pain was unbelievable. Apparently you are more sensitive to pain whilst on chemo, didn't know that.
- kmakmMemberGlad you had a good one @Harvey1903.
My BS put me onto Liz O'Riordan's blog. It was my bible before I stopped lurking here and joined. She writes very well. K xox