Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

@FizzyOrange The sickness has been a feature since I started!
Re blood pressure etc. The first month I had to go for weekly blood tests, and was supposed to have a weekly nurse led follow up,This didnt happen though (the follow)up. Now Im on monthly check. I have my own blood pressure machine so check it myself, as otherwise it would mean going to a pharmacy every week ,no chance of getting it done at the GPs
Haunteddishcloth Thanks will investigate the patches.
How did you come about your fantastic user name by the way !

@peridito thank you for that. Good to know things improve with time & I must remember it's not even been three months yet. They did say it would be 1-2 years before things really settled.

Hunger, cold and tiredness all make me feel nauseous, I understand the hunger & tiredness but not the cold. V strange! I'm holding in to the thought that things do get better, I'm finding this bit really tough.

@thereisonlyoneofme domperidone has helped me with nausea. It relieves it to eat a bit at least.

@Runningwithoutstopping I hope you are feeling ok and glad Covid has been manageable so far.

@TopOfTheCliff hope the weather held out for the solo sail home. I wanted to get my GP's a thank you gift as they have been brilliant. Are there any gifts you particularly liked?

@Acinonyx2 I think all these treatment plans are tough going. Having bits of your body cut off and being stuff with toxic drugs feels barbaric when I stop and think about it, so I mostly try not too.

@HauntedDishcloth hope the side effects have resolved. Activity rehab sounds fab.

I had a minor crisis at the weekend when my oesophagus became completely obstructed at dinner. I couldn't eat or drink anything at all for 18 hours. No amount of vomiting seemed to help. It was v weird & a bit traumatic but I manage to avoid a hospital admission and shift it on my own so pleased about that.

I'm due chemo this week but going to delay it again as I've not regained the weight this time. The plus side of my new skinniness is I've just bought loads of clothes from the kids section in Next & Zara! Age 12 but I am looking pretty stylish 😉

@thereisonlyoneofme thank you, oh dear, I've been started on 300mg a day so am dreading the sickness, I start taking them in the morning. I've been given enough Domperidone for 3x a day which worked on my infusion chemo so am hoping it does the trick this time. I've been told weekly blood tests and was asked if I had a home blood pressure machine - I said I didn't so she said it would be fine to be checked when I attend the unit in a month's time, now I'm wondering if I should buy one.

@quinin I'm so sorry to hear that you are having such a tough time .I hope your new team are more helpful and empathetic .

A completely obstructed oesophagus and not being able to eat or drink for 18 hours sounds very scary indeed and not a minor crisis! I think it's not unusual to have to have a "stretch" after the op .Some people have several .It's a minor procedure - just another endoscopy .

Do you ever look at Health Unlocked ? Forums aren't for everyone I know ,especially as 99.99% of posters are those for whom things aren't straightforward .But there may be some information that would be useful to you on it .
healthunlocked.com/oesophagus/posts

@HumphreysCorner thanks for popping in. Hope work is going well!

@quinin the blockage sounds scary. Glad you resolved it. I recall patients saying a mouthful of fizzy lemonade sometimes helped unblock total dysphasia but agree with @peridito that a stretch may be needed. Do ask their advice,, but I understand you want to stay away if you can. As for gifts, most doctors enjoy a nice glass of wine, chateau cliche, or perhaps just a heartfelt card with your thanks and a small pot plant or some quality chocolate? I’m shopping for the nurses for Saturday’s final Herceptin now.

@Acinonyx2 my solo sail was a glorious end to the summer season. Although I was mildly seasick and ached all over afterwards it was in a good cause and highlighted the importance of context. I tend to feel sick when anxious, sick in cars and boats and sick when I go onto the oncology unit. I am now queasy with ginger as I overused it during chemo but also strangely with lavender nutmeg cinnamon and other aromatic spices. Drugs work well for me, I use cinnarizine and hyoscine or avamine on the boat, with 3 day scopolamine patches for further afield. I do wonder if there is a way of retuning the vagus nerve to stop it sending nausea messages to my brain all the time. When I had my gallbladder out I felt much better for a while but I think it is my default symptom instead of anxiety or fear.
I am thinking of you and your scans again, and hoping you are feeling better. I do admire you for keeping up with work. I still can’t remember what day it is let alone cope with a complex day of work. I feel like a goldfish or a small fluffy animal with no short term memory at all. Hello world!

@Anxiousbuthopeful sorry to hear about your mum. I think there is a thread for family of Stage 4 patients somewhere here. The new drugs for melanoma are nothing short of miraculous.

@thereisonlyoneofme do talk to your team about a dose reduction if the nausea is crippling. That would still be better than stopping altogether. You have come so far from such a terrifying beginning. Is your dog with you now? I seem to recall that was a worry early on. Hugs

Off to see DM today as she had a nightmare and threw herself out of bed and couldn’t get back in! My DB thinks she isn’t coping and I need to keep his extreme interventions at bay. She just needs a bed rail and a cuddle I think

Regards to all, fingers crossed for good results and minimal side effects
Top

Hi all. I have just had my pathology results after surgery last Monday (my surgery came after chemo as I’m her2 positive).
I didn’t have a complete pathological response as there were still some active cells in the 1 lymph node that had had cancer in it. My surgeon said it was a good outcome though.
I’m really not sure scientifically how good or not the outcome is. Is it simply not good as there were some cells left, or are there levels of negative outcome?
Sorry if the above sounds muddled. Feeling a bit stressed as earlier, my surgeon was very positive, telling me that no cancer had been found/no radiotherapy likely, then later telling me there was still some in the node, radiotherapy will be needed and probably Kadcyla to replace Phesgo.
Just wondering also, can I work whilst on Kadcyla?

@Lunificent That sounds like a good result but I know how easy it is to overanalyse and tie yourself in knots. I too had what is described as a good result on paper but I still wanted to know the confidence level of that result but my oncologist couldn't tell me. There is no way of knowing what is going on at a cellular level which may or may not be significant. I had no evidence of any lymph node involvement after my surgery but radiotherapy & Kadcyla was still recommended as a "belt and braces" approach, which logically I know is best as otherwise I'd be kicking myself I hadn't done enough if there should be a recurrence or future spread. Apart from that aspect, how did you find surgery and are you recovering ok so far?

@thereisonlyoneofme My user name comes from the mind of the fabulous comedian Bob Mortimer; specifically, his "Train Guy" skit he sometimes posts on his Twitter/youtube where he takes off an obnoxious business idiot in a train carriage talking loudly on a mobile to one of his colleagues, using loads of made-up nonsense business lingo. I find it hilarious and love his surreal sense of humour which shows no signs of abating as he ages. Funnily enough, he met with a cancer patient in the latest episode of the Gone Fishing TV series that was shown on Sunday. They were talking about a scheme called "Cancer and Pisces" that had been set up in Wales to allow cancer patients to experience fishing as a means of relaxation, escape, etc Bob was able to empathise as he's a got a serious heart condition that he had surgery for and now has to manage. If you don't already watch it, I can recommend it even if you have no interest in fishing - the stunning scenery it shows of this country is so peaceful to watch.

@HauntedDishcloth thanks for your reply, that’s helpful. I think I’m doing relatively well after surgery. It was 9 days ago. Drains and dressings were removed today. It’s still sore and tender, particularly near the armpit. Nurses say 5ths wound looks good.

@TopOfTheCliff I envy your (totally earned and well-deserved!) retirement. We are barely a year apart I think, in age and I'd retire immediately if I could. Dh and I have lived colourful lives (me especially) which I don't regret except some pension-planning might have helped! Alas, we cannot retire unless one of our slightly less mad schemes comes off. Having a 16 yr-old doesn't help the financial planning either.

@Lunificent you will be joining us on Kadcyla. I gather that most people find the side effects mild to none. Unfortunately my body doesn't seem to like anything and reacts to everything - except cancer it seems. So just wait and se how you go.

I am back at work but fortunately not FT (varies) and mostly from home. You should expect to work on Kadcyla but there will of course be hospital appts etc which are a royal scheduling PITA.

I already knew before surgery and the pathology - but then had 7 positive nodes after surgery. It is rather difficult to grade the outcome but basically less is good.

It is rather stressful to find the goal post has moved - I remember being very upset when I learned my herceptin injections had morphed into 14 cycles of Kadcyla. It's worth doing though and hopefully you will not find it too unpleasant. (If you do - you can complain to me ....)

@Acinonyx2 I envy you your colourful life. I am the opposite I have always taken the sensible path and planned for jam tomorrow so it was a huge shock to realise I could easily have had no jam at all! I am making up for lost time now so expect a rackety few years health permitting. I remember sitting with a group of medic friends discussing how we had all been so law abiding none of us had ever even smoked dope. We planned a mad trip to Amsterdam once we retired to catch up.
That isn’t a priority right now but who knows what 2022 will bring?

Last dose of Herceptin tomorrow. I’ve bought the staff cake fruit and chocolates as I couldn’t decide which was best! Then I am off to a party. I really hope my doom laden BCN is wrong about the end of treatment mood crash. I’ve got lots planned and no time for existential worrying.
Love to all
Top x

As the young uns say @TopOfTheCliff I'm "well jel" of you having your last Herceptin tomorrow! But good for you Will you still come into the thread occasionally & inspire us with your activities and stories of the sea?

I've got rotator cuff injury on my shoulder on the opposite side to my mastectomy. Everyone was warning me to avoid getting a frozen shoulder on the surgery side so I think I must have massively overcompensated on the other side. It's not stopping me doing my zoom acitivity sessions though. Before all this I used to chant "F*k the fat" in my head when I was finding an exercise hard going but now I find myself thinking "F*k the cancer"

Can I join you guys? Diagnosed last week with invasive ductal carcinoma, grade 3, er pos. Still in shock I think.

@WeeFae welcome to the thread no-one wants to join. It is a shock when you are first diagnosed and then there is the wait for treatment to start and your mind is in overdrive.

Today is an anniversary of sorts, a year since I had my smear test because I thought something was amiss and I get to go and have my pre chemo bloods done ready for next week.

Thanks for the welcome MrsPnut. The waiting is awful! I had an MRI and CT scan yesterday, so just waiting on those results to find out what happens next. I can't even remember if the DR said there was any lymph involvement. The suggested plan was chemo, double mastectomy with reconstruction, radiation then hormone therapy. I have the BRCA2 gene, so full mastectomy is recommended.

Hello I'm back from my first surgery. "Wire guided local excision and sentinel lymph node biopsy". All in all not too bad, they only took part of my breast, surgeon was happy, everything went to plan, we'll see how successful it was in a couple of weeks time, and then I go back for the reconstruction (or to take the rest!). But she did say that even when she was operating, there was no discernible difference between the cancer and the normal tissue. Hopefully they took away enough, there is always the risk they have to go back but I guess it was a risk I am willing to take for now.
Right now I'm feeling okay, pain is not too bad.

Sorry I can't reply in such detail to all your lovely posts, nor can I follow your medical discussions and acronyms (yet) but rest assured I am reading them all and taking a lot of positivity from many of them.

@WeeFae hello and 'welcome' to the place nobody wants to find themselves in. I'm only 4 weeks in to my journey but this thread is full of knowledgeable and helpful ppl if you need talk. Take your time to get used to your new situation, it's always a shock, my BC is only grade 1 but the news definitely came out of the blue and knocked me out for a couple of days. I didn't tell anyone for weeks (except DH) and am only now going to tell my parents who live abroad.

@Runningwithoutstopping I hope you're continuing to recover from the covid, glad to hear they're keeping a close eye on you.

@TopOfTheCliff hope you had a good day yesterday, and don't stop planning and enjoying life.

@Acinonyx2 I totally get what you mean about moved goalposts, hang on in there you're such an inspiration. Also: I had to check into three different hospital departments yesterday and was only asked the 12 month question once

Hi, all
I’m going in for surgery and sentinel lymph node removal for invasive lobular breast cancer. I’ve had an MRI and they think they can do lumpectomy with radiotherapy and reconstruction. Or I can pick mastectomy without radiotherapy, with or without reconstruction. They say the chances of recurrence with either option is roughly the same. I’m daunted by reconstruction with lumpectomy - taking a flap of skin, tissue and muscle to build up the missing section of breast. It seems a lot to go through. I can see the reasoning with a mastectomy. Has anyone had a reconstruction with lumpectomy?

"@HauntedDishcloth* I love Mortimer and Whitehouse Gone fishing, its is brilliant. I wait each week for Bob to fall over. Im going to buy his biography(autobiography?) when it gets a bit cheaper.

@daisypond I think that's what they're doing for me except nobody has called it a lumpectomy. Done in two stages so they can be sure they have got all the cancerous tissue. I had the first surgery yesterday and they inserted a 'balloon' of water into the space for now. This part of the operation felt not so bad, I'm not in much pain and can move nearly normally. I guess when they take the flap the op will be bigger and a bit more invasive. My gut feeling was that I would prefer a partial removal over a complete mastectomy but you may feel differently, and I would always have gone with the surgeons decision had she not been reasonably confident of a good outcome with a partial removal. I think radiotherapy is on the cards in all cases for me.

@NewlyDiagnosed
Thanks for your reply. My gut feeling is to go for mastectomy, get it over and done with. I already had a lumpectomy last year and it has already recurred, so I’m hyper anxious about that. What’s the time delay between the initial surgery and the reconstruction for you?

Hi @daisypond right I see, in your case I agree I would probably also go for a mastectomy and be done with it. I'm not sure what my delay will be, it was referred to as "after 2 weeks" in the initial discussions. I definitely have a f2f appointment scheduled in 2 weeks, but my op may already be in the system I've just not yet been told, I have a check up phone call some time today. My cancer is apparently not aggressive so our time scales may vary.

Hello everyone

I am in remission now but I had a rare type of Non Hodgkin Lymphoma called PMBL in my chest. I was 24 and 15 weeks pregnant at the time with DC3. Had very scary symptoms like passing out, suddenly being sick, swollen face and an inability to lie down. Found myself in ICU with a football size tumour behind my heart which collapsed one of my lungs. I just want to raise awareness of this and encourage anyone who has a cancer like this that although it is terrifying in the beginning and you are scared you are going to die, it DOES get better once you get the chemo in your system the tumour melts away with each cycle. This was 4 years ago for me, initially some chemo regimens didn't work well and it took me a year to get clean PET scans, but these doctors have so much up their sleeves and here I am today! I had a stem cell transplant with own cells, and radiotherapy to my chest..and the bugger finally went into remission!

I will start having mammograms next year at the age of 30 due to being high risk of breast cancer thanks to the radiotherapy..im slightly scared but hopefully I will be fine

@Winecurestiredness thanks for dropping in and giving us your reassuring news. You were so young to go through all that! And with tiny DC to look after too. We are still hoping to hear from our buddy @Babamamananarama after her transplant for something very similar. I hope she is back home convalescing now. It is always comforting to hear about success stories when the mountain to climb still seems huge.

@daisypond and @NewlyDiagnosed welcome to you both. I had a WLE or lumpectomy in December and was inspecting myself in the mirror today. From straight ahead I can’t see any difference between good boob and bad boob. If I lean forward the operated one that had radiotherapy is higher perter and smaller. I think the treatment has altered the texture of the boob tissue. I’m amazed at how skilful the oncoplastics team are though. There are no scars visible there. My armpit is another matter but I don’t care 🤷‍♀️ I’m cured!
Keep away from Google and keep busy while you wait. It will get much easier once treatment is under way.
Regards to all
Top

Chemo 7/8 today, reducing the dose to see if I can reduce the side effects.
I went into work yesterday afternoon and had a great time catching up with people. I’m planning to go in again in just over 2 weeks to offer some help with some software training.

It's a treatment day for me too: #3 out of 14 on Kadcyla. V apprehensive as side effects unexpectedly bad last time. Hope your dose reduction is effective @MrsPnut and after today, only one more left!

Any news on the pneumonitis @Acinonyx2? And how was your last Kadcyla?

Thank you @TopOfTheCliff for your description which matches what I've had explained to me. Right now I'm recovering well from the WLE (I checked my notes) and lymph node biopsy and have an appointment for the next check in just under 2 weeks. After inspecting myself in the shower I was amazed how small the incisions were really (2.7cm was the size of my invisible tumour), and I know the surgeon carefully placed them to facilitate the reconstruction later. Most of that side including the armpit is numb, but I knew that would/could happen. I'm just glad it's out and tbh, I would wear any visible scars with pride

Back working too - still WFH so no problems there.

I never googled anything my kids however did, which is why I was careful to tell them the exact truth of what's happening. It would appear that she only checked the definition of 'Stage x' cancer... and that was quite interesting and worth knowing.

Finally also spoke to my 81 yo parents abroad who I haven't seen in 2 years now. It was good that I waited till I was able to tell them "good news" relatively speaking, and they could hear I was doing well, and repeating all the good prognosis for women in my situation. A few sleepless nights avoided I hope!

Good luck to everyone having treatment today.