Cancer support thread #73 - come in, we're here for you.

[Trumpton]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is HERE

Current members, please do introduce yourselves smile

@meercat23 May I ask what side effects you get from Herceptin? My last chemo / herceptin was 31st Dec. Most of the chemo side effects have worn off but I still have a constant streaming bloody nose. An annoying and gross, but not serious side effect. I thought it was the chemo but maybe it's herceptin - which would mean I was stuck with it for another 9 months.

Bit fed up because they stopped my Rheumatoid Arthritis drugs before chemo as they suppress the immune system.
Joint pain is the obvious symptom of RA but the you can help that with painkillers, the worst and lesser known symptom, to me, is the aching fatigue. I have been pain free since October thanks mainly, I think, to the steroids. Now they won't let me re-start until my bloods are back to normal levels and the RA is back with a vengeance. I can now say categorically that RA fatigue is much worse than chemo fatigue.
The good news is my painful rash is fading so I think was definitely the paclitaxol.

@Skap
Runny bloody nose here as well !
I wonder...

Skap and Trumpton According to my oncologist the runny nose is definitely Herceptin I get little sore patches like mini cold sores around the edges of my nostrils too. Probably caused by the constant running. It starts to get better toward the end of the three weeks and then off we go again!

I do get some minor nausea at times which I think is probably the Herceptin but nothing extreme of too difficult to ignore.

I also get some sleep disturbance at different times of the cycle and joint/muscle pain. I do have arthritis anyway but it gets worse at various points in the cycle.

The worst of the joint/muscle pain though is after the Zolodronoc Acid infusion. I have had two rounds of that and each time I have had a couple of days of quite extreme pain. That is only every six months though and only two more rounds of that to go.

I feel very ungrateful moaning about the side effects. I am very thankful that these treatments are available but the side effects do need coping with.

Ah thanks meercat. Seems we are stuck with it then Trumpton. I know it's minor in a medical sense but I'm permanently surrounded by blood stained tissues and it seems worse at night, blocking my nose so I can't breathe. I get a bit of nausea with herceptin, usually the day after injection. Anti histamines help a bit. I don't have the Zolodronoc Acid but it sounds unpleasant, what is that for?

ZA is for bone protection. Not sure exactly why I need that but I seem to half remember it is because something I have been given can weaken bones. I decided right at the start to say yes to whatever they offered/recommended.

Sorry I somehow missed off the end bit. ZA is the only thing I have had second thought about.

Hands up here too for runny sore nose on herceptin. My eyes run too, and I'm still getting bouts of dire rear as well, though nowhere near as bad as when I was on chemo. Also intermittent joint and muscle pain which I'm.pretty sure is down to the herceptin. I too have longstanding inflammatory arthritis but have been able to go back on my very effective meds, so I don't think it's that.

Post active treatment, I'm dealing with 'the fear' at the moment. About lots of things, but mostly about it coming back. My boob, armpit and chest feel tender, probably cos of the rads, and i keep convincing myself that I can feel lumps. It's exhausting and I need to calm down!
To the outside world I look like I'm coping brilliantly.
Got another good night's sleep last night though after listening to the hypnotherapy relaxation download.

@WTF99. The Fear. Yes I feel it lurking in the background. I've yet to start radiotherapy so still in active treatment but I can imagine The Fear being a long term thing. In my case two mammograms and an ultrasound in the previous two years gave me the all clear. Apparently it wasn't all clear so either there were two separate incidents of human error or the cancer was invisible. I fear I will never be reassured by a negative mammogram. I've only actually seen my oncologist once. That was in September when he told me the plan for chemo. Since then only CNS. When I do finally get a face to face with him I want to ask some difficult questions. Plus I want some advice on what to look for in case of spread or recurrence.
I hope your counselling sessions help.

Meercat

Like you I decided to take everything they recommended. I was told that the Zoledronic acid has shown a small benefit in reducing risk of recurrence in the bones in post menopausal women. I had my first infusion in October last year and the immediacy of the side effects was not pleasant. Not looking forward to the next one in April if I’m honest. I was told to expect “mild flu symptoms” but I felt really ill and the Christie sent me to A&E.

I also had continual dripping nose on Herceptin and occasional nose bleeds. I got used to carrying a handkerchief in every coat pocket/handbag. I think it might be tailing off a bit now (last Herceptin was in October).

Mrstraveller Goodness I didn't expect that the nose drips etc would continue for so long after the Herceptin was over. Still, having coped with it for this long I suppose a bit longer wont matter.

When it came to accepting treatments I was told quite firmly by my daughter. "If they tell you that the treatment is optional, it isn't! You need to take everything they offer." I did actually agree with that but was in such a fog at the time that I might have dithered a bit otherwise.

@Mrstraveller you won't get the same effects again. Totally weird but true. My first - was soooo poorly. Dreading the next but felt fine. I've had five so far. I sometimes feel a bit snoozy afterwards but have had a couple and then gone to work so please don't worry.

Not sure if I belong here, but have had a recall letter after my first mammogram last week (turning 50, so that's why I had one). Worried absolutely sick and dreading bad news at my appointment on Thursday.

Thing is both DH and I have carefully examined both breasts and there's nothing, no lumps. I did have a fibroadenoma removed 25 years ago. Then had a little lump after having a baby 12 years ago, which was a cyst. But can't even feel that anymore.

So worried but confused there's nothing to feel?

I had my first dose of docetaxel yesterday and have had really bad "dire rear" since then. I know it's a common side effect, so thought I'd ask for any words of wisdom here - how long is it likely to last for, and when do you call the Hotline? It's not been 24 hours yet, so I was hoping it will pass soon! Any hints and tips for safe food and drink also welcome!

Hi @peaceanddove and welcome. Anyone waiting for test results, further exploration etc is very welcome here. The waiting for answers is one of the hardest parts. I don’t have any experience of breast cancer, but I’m sure someone more helpful to you will be along later!

I didn't post on here until I'd had my diagnosis (didn't share with ANYONE apart from DH, who downplayed it throughout), but in a way I wish I had.

peaceandlove - I also don't have breast cancer experience, but you will get plenty of support here. I do know the mammogram can detect things that you can't, but if there is something there at least you know you found it early. Hope you get some reassuring answers soon.

Ugh, Zorgoth, sounds "dire" indeed. Keep up your fluids.

Hi all, haven’t contributed to this thread for a very long time (breast cancer 2012, followed by radiotherapy and zoladex injections, no chemo).

Just got a question for anyone taking tamoxifen. Do people find that different brands gives them different side effects? Some brands seem okay, I carry on as normal. Other brands means results in me getting hot flushes. I don’t get sweaty, just really hot. It’s not like a temperature when you ill, but more like a hot summers day sort of feeling.

Hello and thank you very much for posting back to me. It's definitely the waiting that is the hardest part by far.

I've just reread the letter and it says I can phone and speak to one of the nurses. Does anyone know how much they can tell you over the phone?

zorgoth I would stick to very plain snacks, toast or dry cereal. Plenty of fluids too.

Peaceanddove Welcome and if you find this place helpful and supportive then it is the right place for you.

I have been treated for breast cancer through last year and an still having three weekly Herceptin infusions until April. I found a lump which did turn out to be cancer. It was removed along with sentinel lymph nodes and it turned out not to have spread.

I can understand your confusion that you have been called back when you cannot feel anything yourself. I suppose that is nthe point of routine testing. The mammograms can pick up anomalies that are very small and before they become apparent to us. I would hope that is a very good sign as all of the information says that early detection gives the very best chance of complete recovery.

Everyone here will tell you that waiting for results, answers and information about what will happen next is horrible and very difficult. If you are like many of us you will be in a state of shock at the moment, a but numb, a bit scared and a bit confused. It is horrible. Once you start to get some answers, whatever they are, it gets a bit easier as you can focus on getting through it. I am so sorry that you are having to go through this but please come and join us in the club that none of us wanted to join. I have found the people here to be amazing and I honestly don't know how I would have got through the past nine months without them and that is even though I have had amazing medical support and my RL family and friends have been all that I could pissoblr have asked.

Loveislandaddict. I am taking Anastrazole rather than Tamoxifen. (For post menopause). One of my chemo unit nurses told me exactly what you have heard and advised me to keep a note of what effects I get with various brands so if one turns out to be better for me I can make sure to go to the pharmacist that supplies those or perhaps even ask for them specifically if that is possible. Until this last prescription I have always been given the same brand but this time I have a new one. I will be interested to see if they are better or worse than the others

@peaceanddove I was only diagnosed with breast cancer last week so I'm not very far down the line. But now I know I feel better than waiting, I'm sure it will be the same for you. The waiting feels like an elephant in high heels on your chest, the weight is always there. My best advice that I received was to keep busy, doesn't matter what just busy!
The nurses are great and will talk over anything. They wont be able to give you specifics without the doctor but they can help with practical and emotional advice.
If you need anything there are so many people here who will help. Welcome and hope you can sail off soon without a second thought about this group xxx

@Zorgothslugofdoom Did the chemo ward give you supplies of loperamide (imodium)? If not you can buy over counter. Nothing dietary will help much for chemotherapy induced diarrhoea.
I got the dreaded dire rear and was told to take TWO tablets at the first incident of diarrhoea, then as the box says after that. I hesitated for fear of going the opposite way but that was the advice repeated to me. If you've done that and it's not working it's time to ring the 24 hour advice line.

peaceanddove Hello there and welcome to the thread. I have breast cancer which I found myself. Is your recall appointment at the screening place or is it a breast clinic appointment? They would be different. I can tell you in detail what happens at a breast clinic appointment if it's that. The nurse might be able to give you some reassurance but won't give a lot away over the phone. My experience is that radiologists can often tell with some certainty if they are looking at cancer on a mammogram though other tests have to confirm it. Lots of people get recalled because there is something unclear on the mammogram. Hopefully it's just that.

Zorgo sorry that you are experiencing the dreaded dire rear. When that happened to me after chemo it tended not to last long but I was on Paclitaxel so I don't know if that it the same on your regime. The chemo unit gave me the generic form of Immodium and told me to take that for a couple of days after each chemo if I needed to. I made sure to always have some available. On top of everything else the unpleasant soreness caused by dire rear was just one side effect too many for me.

@Zorgothslugofdoom Oh I echo what meercat says about the soreness. I was also on paclitaxel which is from the same "family" as docetaxel - originating from Taxus the Yew tree sorry, useless bit of information.
In my case my chemo was weekly and I would start the week constipated and end it with diarrhoea. Yours will be three weekly so I don't know how long it may last.
I won't start Dire Rear war stories but it can be grim and you need drugs to deal with it. Also I think bridget recommended extra long pantiliners .

Thank you Zap. I keep examining but can't feel a thing. Presumably I still have scar tissue from having the fibroadenoma removed years ago, as it was quite big, that would show up? But I did tell the technician taking the mammogram about this.