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

Bit of an unexpected turn of events here. I have pneumonia that's what the chest x ray showed. My GP rang me to come in and she's the head GP so she said she wanted a feel of the lymph node in my neck, then she asked if she could do a breast exam on that side and found a big lump that actually I hadn't even noticed. So 2 week wait for the breast clinic.

Had our one week away for the year and some general time out.

@HauntedDishcloth I hear you on the moving treatment goalposts. Kadcyla has been making me quite sick which is very disappointing as I have another 12 cycles to go (so next spring) and I'm working. Fortunately I work mainly from home and not full time - but it's still a challenge. I need another talk with dr about how to deal with the side effects. I wish my body would object to actual cancer cells as much as it protests against treatment.

@MrsPnut sorry to see your condition continues. My docetaxel was reduced 10% due to pain in my feet and onc said 10% really makes no difference but it did stop the foot pain although if you're prone to neuropathy you can't get rid of that entirely (Kadcyla also gives me neuropathy).

I'm sure everyone thinks I'm done now and moved on. My current euphemism is that I'm just 'a bit too tired' to do such and such

I see we have new lumps aboard, welcome all. @quinin that sounds rather serious - I've had doses reduced twice due to side effects less than that. I do find there is an unfortunate lag catching up and dealing with the reality of the side effects if they are off-script.

@Whatwillbewilbe Hoping Monday comes round quickly for you, once you know what you're dealing with you will feel stronger. I had 3 DVTs in my leg which started my investigations plus the growth on my ovary. You will probably find they will biopsy your cyst first to see what it is rather than take it out and then test it. It was initially thought that my DVTs were linked with my OC but my haematologist told me yesterday that this doesn't appear to be the case. She doesn't understand what could have caused my clots but I will remain on blood thinners for life. Are you on anticoagulants?

@quinin oh my goodness, you poor thing, sorry you're having such a rough time. My dose of chemo was reduced for less dramatic side effects than yours.

@Bakewellisntjustacake sorry to hear your news but it sounds as though your GP is very good. The waiting is truly the worst bit.

@Acinonyx2 I am looking at years (if I last that long) of maintenance chemo with potentially awful side effects and yet everyone thinks I'm 'finished' now, I do find it upsetting. I feel as though I am milking what is really a bad cold sometimes.

I had good news at my biopsy appointment today and the relief is immense! I had another ultrasound on my liver nodule and then the consultant compared these images to the MRI and concluded that it is certainly a haemangioma. I will need another ultrasound on it in a year to see if it has changed but I will have had one, probably two CT scans by then. I hope to now to onto my maintenance chemo. As soon as I got home, I rang the CNS to tell her my news - it seems to be uploaded to their system so unless she looks she wouldn't see it and I want to be in the MDT next week.

@FizzyOrange Yes, I have to take Warfarin for six months. That's interesting that they may do a biopsy without removing the cyst, I presumed they would want to remove it even if it's benign.

@Whatwillbewilbe I was just going on what happened to me, it may of course be different for you. I find the idea of having clots very frightening but I am more accepting of it now. I am on Rivaroxaban as my anticoagulant and it seems to be fine, the only problem is I have to eat with it and when I was on chemo that was sometimes a problem on my nauseous days.

Fizzy I was so pleased to read your up date and pleased that you can start your maintenance now xx

SewingBees My friend has a wig shop & can supply a wig in any size you need, she also does video consultations if you aren't close enough to go in, She is in Eckington Derbyshire & has both Instagram & Facebook pages if you want to have a look, it's Aspire Hair. She lost all her hair when she was a child due to alopecia & won't sell any quality of wig she isn't prepared to wear herself

@FizzyOrange Yes, the clots are certainly frightening. I was kept in hospital for a week with mine, although I did also have Pneumonia and Pulmonary Oedema. I was relieved when an echocardiigram showed that the large clots in my lungs hadn't also damaged my heart by putting strain on ttem, which the consultant was concerned about. I do sometimes feel a bit "what if" , but I try not to dwell on it x

Im on Rivaroxaban too. I dont know why people are still put on Warfarin it needs much more management. wasnt told that I had to eat with mine though

Got first weeks bloods results from Niraparib, all good except CA125 gone up 2 points. Big mess up at the hospital as they didnt think I was starting it till September, one department obviously not informing the other. It does seem to have gone to rats there lately they have been wonderful up to now

@Runningwithoutstopping thank you Liz, I am still waiting for my HRD test on my ovary tissue to come back so that may delay my maintenance. If this tests positive I will get Bevacizamub with the PARP but if it tests negative then I will just get the PARP. The HRD test last time took 3 and a half months to come back so I am now fretting that this will delay things. I have been doing some research and it may be that they won't start the PARP until they know what this result will be. Have you had any side effects on the Bevacizamub? Xx

@Whatwillbewilbe I do a lot of 'what if' and tie myself in knots!

The only thing I have noticed with the Bevacizumab is stiffness in my joints. But for me that is annoying rather than unmanageable i've become a fan of yoga with Adrianne on YouTube. Although I think Adrianne was born in the lotus position and I look like more of a beached whale but in the privacy of my own lounge who cares! She is a lovely gentle Human being as well.x

@Runningwithoutstopping my previous chemo gave me awful joint pain, but more pain than stiffness. You're doing well to even be doing yoga, I got down on the floor the other day to get something out of a cupboard and couldn't get up! X

@thereisonlyoneofme I'm on Rivaroxaban 20mg which you have to eat with but I was on 10mg last year for a few months and I didn't need to eat with that. I have read that a lot of ladies have an increase in CA125 on Niraparib. The two hospitals that I am under here have zero communication between departments

Im on 20mg Riv.! Been -taking it for about 5 years so I suppose it must be OK. Reassuring to hear about increase on Niraparib !

Im obsessing about a painful ingrowing toenail at the moment !
Daft isnt it in scheme of things

I hope you're all doing ok.

Well, I had my gynaecology appointment this morning. The consultant wasn't really concerned about my ovarian cyst, it will just be monitored for now (the CA125 level was only 24). However, she was concerned that the CT scan showed that I have "significant thickening" of the lining of my uterus. She's referred me for an urgent hysteroscopy and biopsy. She did a smear today (as I haven't had one for many years ) and also tried to do the biopsy, as she said it should be done "the sooner the better" but couldn't get through the cervix as it was too tight. I have to say it was extremely painful and I'm completely dreading when they try to do it again in the clinic! How do you cope with this, if you've had it done? Am I just a complete wimp?

I also had more blood taken to test for alpha fetoprotein and something else, which I can't remember. Speaking of blood, I've had lots of bright red vaginal bleeding after the procedure, probably because of the Warfarin I take, so having to wear a sanitary pad. Hopefully it will settle down soon.

Back to waiting for the next appointment...

Back home today after a few nights staying at my mum's. She starts radiotherapy tomorrow for her breast cancer - a small lump that was removed about 6 weeks ago.

Got back to a letter from the oncology team about my chemo, which starts on Thurs. I'm so so nervous about it - I suffer with migraines and vomiting, often triggered by mild dehydration, and I am really worried that the chemo will leave me nauseous and unable to keep enough water down. I guess I'll find out soon enough.

In an attempt to stay positive I've spent this evening starting a craft project for my sister. It has been a nice distraction, and all being well I'll manage to finish it for her Christmas present.

I had a lumpectomy and SNB 2 weeks ago but am still very sore if I move too much, even using the other arm. I’ve read about people being able to go back to work quite quickly and as a teacher I was hoping to go back to work before I start radiotherapy. However 2 hours in school preparing for the new academic year has wiped me out for the day and that was without lifting anything or moving furniture myself. Is it normal for there still to be pain after 2 weeks? I have my follow up appt next week.

@moorfool I have no advice but hope it gets better soon.

@SewingBees sounds like your family are dealing with a lot. Hope chemo goes well on Thursday. I had two hyperemisis pregnancies so was high risk for vomiting but had none.

@Whatwillbewilbe I hope the bleeding has settled. No real experience aside from coil fittings where they used local anaesthetic. Uncomfortable but manageable, although I think when you know it's for cancer everything feels worse.

@thereisonlyoneofme, sympathies ingrown toenails are surprisingly bothersome.

@FizzyOrange so happy to hear your positive biopsy news! Must be such a relief.

@Acinonyx2 you are right re: lagging off script side effects. I now seem to have developed an unusual problem with my feet due to the Dox. They are mottled and feel odd. I've been told the skin will blister and peel off which im not looking forward to.

@Bakewellisntjustacake I hope you are feeling a bit better and are resting and taking it easy.

@peridito I do have great dietician support thankfully and see them regularly. Until now my weight loss has been more around being healthier rather than the treatment. I lost a bit of weight at diagnosis just from cutting out all the crap is was eating. My weight was the stable through chemo. I got as fit as possible for the surgery and lost weight then but minimal post op. I didn't follow the soft diet as it caused dumping syndrome so have just been eating normally with no issues until the chemo. I really don't want a feeding tube 😑

My appetite has returned and I'm feeling more human thankfully, managing a gentle cycle on my bike. I've also bought new underwear as wearing saggy knickers was oddly disconcerting.

@quinin Lol at the saggy knickers

@SewingBees I'm learning to be more proactive with anti-nausea meds. It really doe work best to get ahead of the problem. Also - there are a range of meds not always given routines so do ask if you need more.

@moorfool 2 weeks is really not that long - I suspect some patients will have pain for a while - perhaps your dr can recommend some physio to help. I've just been googling as I have pain 5 months on from ALN, lumpectomy and mammoplasty and apparently this is the case for over 20% of patients so that is oddly reassuring as long as it gradually gets better. I have taught in school though and I know how physically/energy demanding that is - radiotherapy can also be very tiring so I hope you have some flexibility going forward.

@quinin foot problems are not that rare on dox - I had mine cut to 90% for this and it was a big help for such a small change. Has yours already been reduced though?

I really fancy some new knickers

I suspect this Thu is the last in person appt I will have with my less-spotted onc for months a while so preparing all my questions.

@quinin so sorry to hear about your feet ,hope the prediction is not entirely fulfilled .

The feeding tube was ,as so many things ,worse thinking about than the reality .I plugged myself in at night and coped . I think I was just relieved that it wasn't a nasogastric tube which I would have hated .

@moorfool I had a lumpectomy with reconstruction and sentinel node biopsy back in April. I had 12 weeks off, I'm self employed and didn't want to be cancelling work short notice for appointments and radiotherapy( although I knew roughly when it would be it wasn't confirmed until a few days before). I wasn't allowed to drive for 4 weeks so wouldn't have been able to get to work, the downside obviously was no money. I don't remember any real pain more discomfort and lack of mobility(now its just a numb area), are you doing the post surgery stretching exercises. Listen to your body if you are in pain slow down and if that doesn't stop it get help .

@KitchenFishCurry Thank you for your reply. I haven’t been told anything about not driving although I haven’t felt well enough to try! I’m doing the physio exercises but sometimes that can be painful. Hopefully I can ask the doctor next week at my follow up appt about the pain.

@Acinonyx2 school has been very understanding. It’s just teacher’s guilt about not being there at the beginning of a new school year. Thank you for your reply.

@quinin thank you