It is really strange. I probably only check this forum once a week but each time someone has posted it has coincided with my checking in here.
To answer your question, Wandy. I am doing OK - sort of. Taxol failed last month. Although it was holding my bone and lung mets stable, I have developed mets in my liver now and the ?met on my pancreas has continued to grow but the radiologist cannot make up his mind if it is on my pancreas or duodenum. This from a professor no less so it must be in a difficult location. It is a shame as I would like to have it biopsied but my onc is against it because of the location. I am thinking of asking him to go for one of the liver mets if they are easily acessible. It seems strange that the my bones and lungs are stable but I have new ones in the liver. Mets are heterogenous and it seems likely that the liver tumours have a different profile. I read somehwere that liver mets are the most likely to change their profile to HER2+. Anyway, I am on Xeloda now and keeping my fingers crossed that this is working. It is so hard to tell unless you have a palpable tumour or enlarged lymph node. Next scans around the corner.
I have been keeping busy when I have had the energy. My sister and nephew visited from the US and stayed a week. It was the first time my nephew, now in his twenties, had been abroad so we did rather more than I would have done if it had just been my sister visiting. My daughter and grandson went home yesterday after a week visit and I am hoping get up there later next month. If my energy levels hold out we are going to the Christmas market in Manchester.
I have a busy week this week. Physio tomorrow afternoon and a trip to the solicitors in the morning to redraft my will. I want to create a trust for my grandson and any future children my daughter may have. Wednesday will either be a short visit or a long one to the hospital. My port keeps blocking and we are going to check it the day before my treatment (ibandronate IV) when the interventional radioligist who put it in is available if it blocks again. We have been clearing the clot with urokinase but this isn't really satisfactory. Thursday, I go back in for my IV and to see the oncologist. Friday I have my flu shot. Today is a day off although I am busy trying to catch up on laundry from my visitors.
Sorry you came back with food poisoning, Wandy. I hope that is all settling down now.
Hugs for everyone, Cherry x
It's been a few months since anyone has posted... Cherry, how are you and hopefully everyone else is well.
Just wanted to check in with you all. I'm sure we're all just getting on with our lives, which is great, but let me know!!
I am well, enjoying life and work. Recently back from Turkey, albeit with a dose of salmonella poisoning!!! But all well now. Not sure I'll be eating kebabs again anytime soon!!
Anyway, just thinking of you all.
Yes, Ninja. I had the tax trots very badly to start with but as time went on my body adjusted to the treastment so that although my bowels are not normal they are more manageable.
The neuropathy is a nuisance. I get it in my hands and feet. I gives me cramp in my toes. Very painful when that happens.
I hope the new Crohn's medication gets you sorted out.
Hi Cherry, good to hear from you. Your experience with weekly Taxol sounds like mine. Feet like walking on slabs of meat, hair skimpy, and blood transfusions.
Do you get the Tax Trots? I didn't get a UTI but the TTs were awful. I've had a Crohn's flare ever since and they have let me recover from everything before hitting me with stronger Crohn's meds this month.
I hope that the pancreatic thing works out OK - it's just one thing after another for you 😞
I haven't looked in here for a long time but something made me today and I was so glad I did.
I am pleased everyone is doing so well; Ninja healing, Wandy enjoying her new job and Jane, fingers crossed that your mammo is clear. Ignore the reticent radiographer. It was probably just PM making her unrepsonsive.
Wandy, I am sorry to learn about Sophie. I know she leaves behind 4 children including two young daughters and my heart goes out to them. As you know, we emailed a bit back in April. I didn't want to say anything at the time but I very much got the sense that she had given up even then. It was so sad.
I continue with taxol and I am having my 15th IV this week. They have switched me from weekly to 3 weeks on, 1 week off and I had my first chemo break last week. I am tolerating it fairly well. Some peripheral neuropathy, hair non-existant and blood work is generally good except my Hb which has been gradually falling away so they gave me two units of blood the week before last. My only real problem has been a recurring UTI. They have me on a maintenance dose of antibiotic now which will hopefully deal with the problem.
My last scans showed everything stable but I have a new lesion on my pancreas that they are just going to watch for now. If it is unchanged at my next scans in September I will carry on with the taxol. There are some women who are doing weekly taxol for Stage IV and have been on it for almost a year. You think they would be keen to have a break but they are frightened of changing anything which is clearly working and they will happily carry on indefinitely. I am keeping my fingers crossed that the taxol continues to work for me. I have gotten used to it and the weekly hospital visits. I know most of the nurses (I have my favorites) and we can chat and laugh when I visit.
Love to all, Cherry
Hello (waves madly)
Haven't heard the word "hooley" for decades!!! (probably since i left Scotland) What was your friend's Woodland name? so sad to lose a woodie (and more sad to lose a friend)
Ninja, you sound more upbeat than you have for a long time - great stuff....
I've just had the annual mammo and am waiting for results, which doesn't normally bother me, but the lady was unusually unforthcoming (which DID bother me!) Oh well.... nothing to feel, so I'm choosing not to be TOO bothered! Life is good.. hectic, but good....
I feel tired at the talk of all this exercise you guys are doing though......
HOpe everyone's oK
Great to hear from you and glad things are getting back to normal for you vis a vis exercise etc...aren't we having the most splendid summer?!!
How are you Cherry, you have been on my mind. Hope things are going well for you. Hope everyone else is in good form.
I am loving my job. Very hectic, every day is different and fairly exhausting but really great. I am also swimming every day and dog walking but don't seem to be losing any weight, but hey ho I'm sure the exercise is all good!
Sadly, went to a funeral this last week. It was an amazing, uplifting affair but also obviously tragic. She was one of the original 'Woodies', who was a good friend in real life. RIP darling Sophie Sheldon.
Enjoy the good weather, although having said that its absolutely pouring here in the Lakes and blowing a Holley!!
Love to you all
Just thought I'd pop in and see how everyone is.
I'm healing nicely now and have permission to exercise (finally!) so have been going to yoga, swimming and started scuba diving gently again so it's all good. I have very restricted movement/pain in my right arm and I'm right-handed so that's a nuisance but I've started physio for that. I lost so much flesh under my arm / side of torso so it's going to be difficult to get that sorted.
Enjoying this proper summer weather!
Pleased to hear from you.
Sorry about your friend. The truth is that we cannot predict which of us will get secondaries and who will not, despite the medical communities predictions and statistics. Every cancer is unique. There are plenty of people with stage 1 cancers who now have secondaries. Equally there are many who thought they would not be here today who are doing well. It's just the way it is.
Sorry about the stitch knot abcess. I don't think these absorbable are as absorbable as they say. I pulled out a half inch piece of blue suture which was sticking out of my thigh a few weeks back. It left a weepy little hole which thankfully healed on it's own. Hope yours clears soon.
Hi Folks. <waves to every body>
Don't have time to chat for long; busy baking. Glad that the Taxol is working, Cherry.
Dunno if you all remember Kate from Halifax, cannot remember her forum name; she was Dx similar time to us, better prognosis than me, and started lots of threads like "Horrific bowel cramps". She died recently and I went to her funeral on Monday. It spread to her lungs relatively quickly and then her brain. Poor girl never really got her hair back; all the treatments kept wiping it out year after year. She did cram in a trip to NY and loads of stuff like feeding big cats at the zoo in the last 12 months though.
My wound finally stopped leaking near the sternum and then I got a stitch-knot abscess last week as the internal stitches start to be resorbed and bits stick out - aaaggghhhh! 'tibiotics have dealt with the actual infection but now I have a new hole dead centre; a cm away from the original hole from November.
Hope everyone is as well as can be expected - group hug xx
Congratulations on the part time job. I hope you grow to love it. Also hoping that you get the problem with your Achilles tendon sorted out. I hope you don't hav eto have an op but if surgery is the only way to go than I will be keeping my fingers crossed for a successful outcome.
Sounding very upbeat these days. Is that all down to anticipating the up coming holiday? Have a great time wherever you are headed.
I don't think any of us have been on her for some time, so no need to apologise. Sounds as if your physio has got a handle on the cause of your hip pain. I hope the exercises will give you good relief in time.
I am coping with the side effects of treatment not too badly. I have had a couple of infections and am as bald as I was on FEC first time around. Compared to FEC it is a very doable treatment regime, made easier now that I know that it is working well. I hope to get a good few months, or more on it. Some don't respond to it. I am one of the ones who does get a good response.
I hope Ninja is off doing something nice and will check in and let us know how her healing is going.
That's good news indeed Cherry - and great to have an update.
I was just typing that, when Wandy's message popped in! Welcome to the world of W O R K.... I hope you really enjoy it, and that they manage to do something about your pain...
Wave to Ninja (hope you've healed at last) and to everyone else...
off for almost 2 weeks on Monday... YIPPEE!
I hope you are all doing OK and enjoying the sunshine today - depending where you are!
I thought you might like to know that the taxol is working for me. I had scans a few days ago and they have shown a 50% reduction in my lung tumours, excellent response to mets in my sacrum and pelvis and the one in my neck was described as sclerotic, by which they mean inactive.
I am carrying on with the taxol and will be having more scans next month.
Hope you have healed completly now Ninja and Wandy I hope you have the pain from your arthritis under control now.
I am so sorry you have lost a dear friend. I hope the grief does not stay with you for too much longer and you have plenty of happy memories of the times you spent together.
I hope no one is concerning themselves too much with my side effects. Compared to FEC, which I had the first time around, the weeky taxol is much easier to tolerate. Tonight's symptom is dry eyes which is causing me issues focusing on this screen but otherwise I am doing OK.
I saw the surgeon who operated on my leg yesterday. Despite radiation to my femur and the chemo it is healing. You can see the new bone growth on the Xray. It is just taking longer than it would on normal bone. I should be able to get back behind the wheel in about a fortnight. I really hope so as I so miss my independence.
Love to all, Cherry xx
I have always hoped that by the time they can predict you will get dementia/cancer/heart disease by looking at your genome, they will also have very effective treatments for it. Let's hope so anyway. Otherwise, the burden of such knowledge would be too much for many.
Cherry - se's sound ghastly.. i hope they don't last too long.. our genes are something we REALLY have no control over, nor the legacy they leave us.... Treatment research is much needed, as you say.. what scares me is that they seemt o think they'll be able to say to our grandchildren "you are at risk from dementia" "you are at risk of heart disease" and so on for insurance purposes! What a curse to live with that knowledge. I wouldn't have wanted to know as I grew up that I'd have cancer now... you deal with stuff as it comes....
gosh, that's a bit deep and heavy! Sorry ladies!
Wandy - sounds hopeful......
Ninja - hope you FINALLY heal......
love to all
I wrote a great big reply yday and for some reason it hasn't posted.
Cherry, am thinking of you, hope your se's settle soon. Ninja, thinking of you too. Finally after a long haul it looks like positive news for me....MRI results second time show no sign of cancer. It seems all concerns do turn out to be wear and tear apart from a chronic Achilles tendonopathy which may need surgery but apart from that I'm good to go and can pack my paranoia away for the time being!! Just my mammo result next week and I can stop all this stress and nonsense!!
Thanks for all hand holding and support. Much appreciated.
Still have this terrible Achilles thing which is v painful and all the normal joint pain which I just have to live with but at least there is nothing sinister!
And compared to what you Cherry, are going through its nothing.
Take care all my May girls.
Cherry, thinking of you muchly, hope the se's calm down soon. Take care of yourself.
I think I am finally coming out at the end of all my testings and fingers crossed its looking positive. Had my mammogram on Wednesday and they said they would give me results next week but I imagine if there had been anything sinister they would have said straight away. I got my MRI results yesterday, there is no cancer. I have got an acute Achilles tendonopathy which might mean an op but all other hotspots are just wear and tear and NOT sinister. Phew!!!
Feel very relieved, it seems to have been a long time dealing with the process...
Thank you for all the handholding, it's meant a lot.
Agree with you too Ninja about the research, we have to keep new treatments funded.
So sorry to hear about those SEs Cherry.
Yes, thinking about it, I had a little bulge in my neck where the central line passed over a vessel but virtually no sign on my chest although I could feel it with my fingertips.
Your mystery gene is why it is so important to keep raising money for cancer research. Without it, I wouldn't have had my Herceptin, no-one would get Tamoxifen etc etc.
Seroma jelly is virtually gone now but the pus came back in the too-thinned area last night. Hossi Monday!
Thinking of Wandy.
Hugs to all xx
Ninja, I so hope that you get some decent healing and stop having to change the dressings all the time. Seroma fluid? Poor you. So not nice.
I had taxol number 3 yesterday. The port has healed nicely. I was prepared for the lump from the port under the skin but the line running under the skin to my jugular is also very visible, too - like a thick vein or a thin tendon. Anyone else see the same thing?
Finally had the biopsy results back and the little sh!t has dropped the ER receptors and is now triple neg. I was expecting it for a few reasons. The primary was only marginally er+, it had come back after only 3 years despite anastrozole, and because of genetics. I had genetics testing. Not BRCA 1 or 2 but I have a huge history of cancer on my father's side of the family. Many different cancers - breast, prostate, thyroid, melanoma. My father died in his 30's of a form of sarcoma and his brother of an acute form of leukaemia when he was also in his 30's. They tested for the p53 gene but that was also -ve. However, the genetics report came back stating that because of the family history there is probably a genetic component, most likely an as yet unidentified gene. On my mother's side of the family there is only one case of cancer that I am aware of - my grandfather, who was 77 when he died of lung cancer, but a life long heavy smoker. The rest passed on in their 80's or 90's of heart problems.
I am disappointed that it is not HER2. There would be so many more treatment options.
I finished rads on Tues to my femur. I had already had 5 fractions to my neck and pelvis. It takes about a week for the SEs to appear. As a consequence, I started having trouble swallowing on Saturday from rads to my neck and have been struggling to eat and drink but this morning it is better, so hopefully I have turned a corner.
Wandy, Still holding your hand.
Love to all, Cherry x
Cherry, PowerPort is just a brand, like PortaCath is, I believe for an implantable central line.
The next hossi visit is a week on Monday. The pus has stopped for now and the jelly stuff (concentrated seroma fluid?) is definitely slowing and only needs to be removed twice a day and hardly stains my clothes now. Sick of it, TBH xx
Ninja, I hope that oozing dries soon. It seems to have been going on for such a long time. You must be well and truely fed up with it. When are you going back to hospital again to get it checked out?
Jane, My daughter has just been signed off from work with stress, also. The first time this has happened. She has just had more than she can handle in the last few of weeks. I think everyone has a limit beyond which things just get too much. She is angry with herself because she hasn't coped better and can't understand why she can't just 'snap out of it'. We were talking about it and decided that it was just like having pneumonia or an appendectomy. You wouldn't expect to get over it immediately and you need time to recover and rebuild your strength. I hope you feel stronger soon.
Wandy, Crossing all crossables for your results and hoping that you walk out of the waiting room smiling.
Port insertion yesterday was supposed to be done under sedation but I stayed awake the whole time and had a long chat with the radiologist doing the port about how they have changed and NHS funding. I had a power port fitted. There is no 'power' involved so I don't know why they call it that but apparently the NHS don't fit them as they are expensive. It is only relatively recently that the NHS provided ports. When they first came out they were about £450 but the price has fallen to £130 now. Before that they did only PICC or Hickman lines. He still does the odd PICC line. Mostly for younger women who don't want the bump from the port showing if they are wearing a strappy top. Personally, I would rather have the implanted port than lines hanging out of my arm. He was also saying that when he first did Hickman lines he was inserting them for the most part 'blind' as they didn't have the equipment they have now to give them a good resolution of the insertion. Back then they put them in the subclavian vein for the most part because they didn't dare risk the jugular vein where he puts them now.
I am having no pain from the port itself but my neck is really sore. They left the access in so I won't be stabbed today.
Chemo at later this morning and rads after. Then a lovely 4 day break!
Hello Cherry and others,
Glad you are getting some reclining time Cherry, it sounds like you need it. As Ninja said, your treatment regime sounds tough. Lots of love and strength to you. I have been MRIing today. Filthy headache with the noise despite the headphones!! Results next week when I have a mammo and physical check.....hopefully that should be the end of it all and the results will be good. Fingers crossed!!
Sorry you are off with stress Jane. Take care of yourself. Hope you are continuing to heal well Ninja.
Love to all and I will let you know my results next week.
Have a peaceful and healing Easter all.
Gentle hugs for the stress, Jane - it is NOT a sign of weakness remember, it is just a sign that you are having more cr@p thrown at you than others xx
Cherry -that is a cracker! I should think there was a room full of people wanting to nut her! Those waiting rooms are very cramped anyway at the best of times. That must have been some jolt! It all sounds pretty tough, so please receive hugs as you are bathed in the sunshine... it's jolly chilly here unless sheltered from the wind!
Wandy - how are things going?
Ninja - good to hear you're healing a little at last....
HOpe everyone else is OK. I'm off work with stress this week, which has taken me by surprise (being a tough nut) but I'm hoping I've caught it early... back to GP tomorrow... Definitely feeling stronger, but not sure HOW strong yet....
Oh Cherry, where did you find your friend? A lucky bag? You must have wanted to clout her!
Your treatment sounds very intensive but I guess it means that they really are throwing everything at it, which is reassuring.
I was OK after my port, just bruised and feeling tender. I found it easier to sleep with my faithful microbead cushion under the port to support it for a few days. I also slept in a crop top to prevent the boobs (it was pre-Mx) dragging on the area.
I got a nice recliner last year and it was a fab way to recover from stuff.
I'm partially healing! The tummy scar doesn't ooze now. The new boob scar is finally slowing down the oozing but the area from November is still very thin and started spontaneously issuing forth some nasty pus on Sunday. I cleaned it and added antiseptic and dressed it and it stopped. It's not hot or red so I'll keep an eye on it till my next appt.
xx to everyone
Hope you are all enjoying the lovely weather! I spent an unreasonable amount on a garden recliner from John Lewis. It is incredibly comfortable. I have been sitting out in the garden with a cup of mint tea for the last couple of days and noticed this morning that I have a bit of glow from the sun.
I have my port insertion later this morning but as I am still on sticks - surgeon's orders, I am wondering how much pain I am going to be in after the port is put in. I have to rely on my upper arms/chest muscles to get keep me moving along.
I am having radiotherapy to my femur this week. Yesterday was a bit of a nightmare. The radiotherapists took 4 attempts to get me lined up. I don't mind this as I would rather be in the right position than the wrong one but having to hold still for the 25 mins was becoming painful. Eventually we got started. They irradiate from the top and then swing the machine through 180 and do my leg from the back, too. Yesterday, they started to swing the gantry through 180 but it actually collided with the table I was lying on! I think, though I couldn't see clearly exactly what happened, that they didn't retract part of the apparatus before moving it. Anyway, it was back to square one getting me lined up. The whole table had shifted about 11 cms and I had quite a jolt, too.
I have rads again after my port placement today and I am hoping today goes off without any drama.
Tomorrow I should resume my weekly taxol and then straight down to radiotherapy for another fraction to my leg.
After all that I will be ready for the holidays!
I forgot to share with you what my dumb/insensitive friend, who was with me last week when my chemo was cancelled, said. When the nurse came in to say the onc wasn't happy giving me chemo while I was taking antibiotics for a UTI, the friend said "Oh no, I was hoping to experience what it was like". I thought maybe we could start be shaving her hair and eyebrows so she wasn't too disappointed.
It got better though when we went round to radiotherapy from chemo later on. In the waiting room for my machine, which was standing room only because they were running 45 minutes behind, she asked all those assembled if they were there for cancer treatment. I positively cringed. There was silence and I said, as quietly as I could, yes they were. I really wanted to say, "No we are all here for tennis lessons!" What a numbnut! It's called Mount Vernon CANCER Centre for a reason!
Wandy, Have you had the follow-up MRI yet? Or is that after Easter?
Ninja, Have you healed now?
Hugs to everyone, Cherry
Hope everyone is well and looking forward to the weekend. It's dry but a bit cooler here. I have ordered and should have delivered tomorrow a garden recliner so I can sit outside when the weather is nice.
Started rads to my neck and pelvis. The pain has increased a little but should get better soon, I hope. My chemo was cancelled this week because I had a UTI. I will start again next week. Rads next week to my femur and port on Wednesday. Really looking forward to Easter so I can have a break from hospitals!
My bowels have been a bit out of sorts this weekend. I am expecting an escalation of the problem when I start rads today as they are irradiating my pelvis which means my lower abdomen will get a good blast as well.
I think I mentioned when we first got together for May 2011 that I have some sort of "autoimmune thing going on". Quote from the rheumatologist. I started with IBS in my early 20's. then graduated to episcleritis, joint pains, areas of alopecia on the scalp, odd rashes. All of it comes and goes mostly with just treatment for symptoms. Never had a confirmed diagnosis. They have thought lupus, then fibromyalgia but never got a clear picture because it fluctuates so much. I have never been as bad as you have been but when I got the reaction to the teicoplanin recently, I knew I had to mention it to you as you would probably react in the same way, probably worse.
Hey I never knew that! It was definitely a doddle compared to EC which made me VERY poorly.
One thing I forgot about - the Tax Trots - you may escape them; mine were particularly bad due to me having Crohn's. I had Taxol each Weds and trots of River Nile in flood proportions every weekend. My Oncy gave me permission to take Imodium for it once I had explained the River Nile comment.
Ninja, I found another reason why I was so relaxed during chemo last week.
From the cancer UK website:
Higs/hugs to you to Wandy! Your chum has been in touch. I had a couple of emails from her already.
Still minimal side effects. Very little nausea -gone now. Steriod flush yesterday. A bit more tired today. The aching joints have started up today, but so far not too bad.
Ninja, I am looking forward to another piriton snooze on Thursday. I slept brilliantly that night too.
When I was having chemo before, I dreaded it each time I went. Now I anticipate with more enthusiasim. Probably from knowing that it may be doing something very positive.
Thanks for asking. It was my first chemo yesterday. Apart from playing hunt the vein, I was fine. Even dozed off in the middle of it from the piriton they put in my IV. No SEs so far but it has been less than 24 hrs.
The radiology dept phoned last night to book my port insertion. They booked it for the same time as my chemo next week. As the request for insertion came from the chemo nurses you think they would have got that info already. Don't know when I will have it now but they are going to try and do it before Easter.
I got some oramorph for the nerve pain caused by the spinal mets but didn't have to use it last night as I was already quite comfortable. I think it may have been the steroids helping with that. Onc was very helpful and explained that if the nerve compression was being caused by soft tissue pressing on it, the RT will give me almost immediate relief. If it is the bone or a disc, the pain will only resolve gradually.
Still no news on my biopsy apparently they have to slowly decalcify the bone before they can test it and that that takes time.
Thanks everyone for your concern and good wishes.
I have both my daughters at home at the moment so I am being well looked after. A bit of an issue getting to hospital for treatments but I am going to be calling in some favours.
We were preparing for my gransons birthday and i was just walking down the hall when there was a load 'thunk' noise. I felt a sharp pain in my thigh and couldn't put any weight on it. Phoned my consultant, who was in theatre but they got a message to him. He said come along to clinic that afternoon around 6pm which I did. In the meantime, I went to bed and missed my grandson's birthday tea, which was a shame but they took lots of pictures. Got to the clinic but obviously back on sticks again and partial weight bearing by this time. So when the consultant came out to get me he said it wasn't broken because he had never seen anyone with a break being able to put weight on it. He thought it might be a tendon snapping over one of the screws he had put in my leg. So off I went for X-rays and then back to see the consultant to be greeted by the words, "well you were right" it is fractured. Very unusual after a rod has been inserted. On sticks for the forseeable future or at least until I see him again at the beginning of May. Moral of the - always trust your instincts. If you think it's broken it probably is.
Went to rads planning this morning. Lots more tattoos. Rads start next Monday. First chemo on Thursday.
Hi Cherry - sorry I wanted them to get cracking! Ninja - Fancy blaming ME!!!!
Seriously, I'm really really sorry to hear about your leg - such pain, and such A pain....
are you on your own at home, or getting some help?
love and hugs