Update: Avastin stopped. Gastroesophageal Reflux & Urticaria. Good Scan result.

[Meridian14]

Hello all.

I have not posted for quie a while.

An update in case anyone is experiencing the same.

My oncologist stopped Avastin after the 14th infusion as I was really struggling with it. I took a break from it after number 13 for several weeks but as soon as i had number 14 my hands seized up so badly the next morning so they decided to stop it. My hands and shoulders are still damaged for now but I'm hoping over time they will improve.

So, for now, I'm still struggling with shoulders and arms that have limited mobility, hands that still seize up, a swollen Achilles for 8 months now which means I can't enjoy long walks with my partner (my favourite pastime) - this really sucks! Stiff joints in general. I'm working with physio on these difficulties.

And currently, annoyingly, I have Gastroesophageal reflux and urticaria, so I keep getting hives and welts on my body and face, and an acid reflux lump in my throat and horrible pain in my tummy. I'm calling my GP about it today to see what she suggests but i have started to diarise everything that i'm eating and when I get pain and hives etc... anyone else having this problem? CNS said Oncologist had a good check of the scan again presumably to take a closer look at my stomach, and she said they are very sure that this has nothing to do with cancer.

On the flip side, the good news is that the Oncologist said that they can't see anything on my 2nd scan that I had 3 months ago. I cried happy tears.

I was hoping to approach a surgeon soon about the possible reversal of my colostomy/stoma. My original surgeon said a reversal could be considered 4 months after avastin stops, if an assessment shows that everything inside looks healthy enough. But an Oncologist I met for the first time at my last meeting said that I would need to wait at least two years after chemo, to give my body a chance to fully recover from surgery but also to watch and see what my body is doing... so, it's going to be a longer wait than I anticipated. I'm keen to get the reversal, not least because I have a parstomal hernia - which is a right pain in the bum (on my tum) lol.

But - the main thing is that they can't see anything sinister at this point. Yay!

I hope everyone is coping okay.

Hugs. Lisa x

[delia2]

Hi. I can’t shed any light but wanted to say I’m glad your scan is clear but I’m sorry for all your other troubles. Maybe you need another surgical opinion on reversing the stoma? Maybe in a couple of months when you see how things are going? Hugs!

[Meridian14 in reply to delia2]

Hi Delia2,

Thank you for your words of support. My next meeting with Oncology is in December. I will ask about it then... see what they say. I definitely do not want to trigger a recurrence by making my body and immune system weaker by having surgery too early. If that is a big risk then of course I would be very wise to wait. hugs back at ya!

[Realistic]

Sounds like your doing amazingly well , with bumps along the way but it also sounds like your one very strong woman. Which we all know you need to be to beat this cancer

Which l know we all intend doing and thankfully on this site it gives me courage to keep going

Your all amazing, have a good day and keep battling on we can do it. Love & hugs SheilaF

[Meridian14 in reply to Realistic]

Thank you Sheila, you too; keep on keeping on. Xx

[Iwillbeatit]

Hi Lisa

I had 18 avastin infusions shoulders locked up I could not do up my bra or get plates out of the cupboard. Pain was awful but sixth months after treatment finished joints all recovered. I hope you will be the same.

[Meridian14 in reply to Iwillbeatit]

This is good to hear. Thanks for letting me know. All the best x

[Broader]

Hi I had 9 months of avastin, my shoulders neck and arms felt absolutely awful and my CA125 was on the rise so I asked to be taken off, things did improve aching wise but the cancer went on the rampage so less than 3 months later I was back on chemo.

I do hope that doesn’t happen to you, it’s a fine line between keeping things at bay and living with the side effects, such a difficult choice 🤔 My CA125 rising was my decider.

It’s great news that your scans are clear.

I can’t comment on the colostomy reversal as I’ve never had one.

I can say that I have also suffered with hives, itching and urticaria, who would know such a small thing could be so debilitating, Keeps you awake at night, embarrassing in front of other people.

I took 3 / 4 piriton a day and eventually it started to ease but it took a while so keep going even though you don’t think it’s helping.

I did my best to eliminate sugary foods from my diet, not sure if this helped or not though.

Fingers crossed with the surgery when you get it, try to be as fit as you can be before it, I know it’s not easy with all you are going through though.

Best wishes

Christine x

[Meridian14 in reply to Broader]

Thanks so much Christine, sorry to hear that the cancer continued.. hope more chemo is kicking its backside!

I haven’t manage to establish what is causing the welts, as yet. Sugar seems to be okay, Not that I eat too much sugary stuff.

I will definitely try and get as fit as possible for when the time comes for surgery.

Thanks so much for your words of advice. X

[bamboo89]

The urticaria and hive like welts strongly suggest an allergic reaction to the Avastin - that type of reaction usually goes after a week or so, but can sometimes last for longer. You could ask your GP or the Oncologist whether an anti allergy medication such as Loratadine will help; as for the stomach pain and acid reflux, if you're not on one of the prazoles (omeprazole and others) or cimetidine already, one or other of those should help. I think it would be helpful to at least reduce those two discomforts, although you'll still be left with the stiffness, unfortunately.

The Oncologist should really be dealing with this, but your GP may well help and advise.

Good luck

Miriam

[Meridian14 in reply to bamboo89]

Thanks Miriam. Good advice. I will start taking Omparezole and see if it eases. I stopped Avastin quite a while ago and it’s completely out of my body now so I think it’s something else going on. Will take it up with my GP now though as it keeps coming and going. Thanks for your advice. All the best x

[Neona]

I have reflux and I think it was caused by alendronic acid for osteoporosis. I have had to stop taking it as couldn’t eat. I have Lansaprozole but not happy taking it as can make already low magnesium levels worse so I get by with gaviscon peppermint tablets.

[Meridian14 in reply to Neona]

Thanks Neona, I do have to have a swig Gaviscon every so often, especially before bedtime. I also fall asleep in a slightly upright position too, which sometimes helps.

Thank you for your response. Hope your reflux calms down. Mine actually has not been too bad that last few days... fingers crossed it's easing up.

All the best

Lisa

[Frenchhouse3]

Hi there Lisa,

I’m so happy for you that your scans are clear, that’s fantastic news!

I too have a stoma which I would love to get reversed at some point. I was told that I’d have to wait two years also. I’m not sure what type of operation I had for it, no one has mentioned this but I know I had quite a lot of bowel removed.

Are you aware of the vests and other undies available through the NHS . They’re surprisingly glamorous and help support hernias as well as for prevention?

Also, as you were relatively young for diagnosis, have you had the BRCA test at all?

I only ask because it may mean you’re eligible for a parp inhibitor?

I don’t carry the gene but my tumour was BRCA2 positive.

So far, no awful problems with the Parp meds, just a bit of diarrhoea some days.

Take care and make sure you celebrate those results!

Love Denise xxxxx

[Meridian14 in reply to Frenchhouse3]

Hi Denise,

Thanks so much for your response.

My tumour tissue was tested; BRCA negative.

Ah, so you were told 2 year wait for stoma reversal too. Clearly must be a standard time for safety purposes - i guess.

I have soooo many different support garments, from cheap ones from amazon to the more expensive ones from Suportx and Comfizz... but actually, the ones I wear most are an ostomy belt I found on Amazon designed by an Italian company, very very comfortable and soft; a brand called ORIONE. I have a 4 of them. But when I go on my exercise bike at home, i put my othe supportive belts on; i'll double them up, for example, i'll wear the cheaper one outside my vest as being cheap, it itches/scratches my skin, then I put my suportx belt over that one. his way i feel really well supported during exercise. I do the same for walking too.

Very keen to get a reversal, not least because I have a parastomal hernia.

Hope you are well and not having any problems with your stoma.

best wishes

Lisa x

[Frenchhouse3]

Hi Lisa, the brand of support garments I’ve used is called Vanilla Blush and though expensive, you’re allowed three items through the NHS.

However, I’m very tempted to try the belts you recommended as I’d love to try running again.

It’s a bit of a drag waiting two years for a stoma reversal and with a hernia to deal with, I can understand why you feel keen to have it done.

I’m very grateful to have mine in that it saved my life but I’d love to be able to go to the loo again normally. I miss it! I even miss farting!!

Lovely to chat with you as I don’t know anyone else with a stoma and it’s good to share experiences.

Take good care xxxxx

[Meridian14 in reply to Frenchhouse3]

I sometimes use the flushable stoma bags... it almost makes me feel like i'm doing a normal poo... its the closest i'm going to get - for now. Let's hope both of us can go ahead with our reversals in the not too distant future.. and one day, enjoy a really good 'normal' poo!

[Frenchhouse3]

Wouldn’t that be great? Xxxxx