Long term avastin...voice gone??

[Puggle]

Hi all, my mother was diagnosed with stage 3c primary peritoneal cancer in 2012..chemo+debulking surgery..2year remission..chemo then started avastin Jan 2016 and on it since. Has done very well on it although ca125 rising slowly the whole time, still NED on Ct scan so onc is happy to continue. Since nov 2018 she’s been having problems with uncontrolled bp and kidney probs but all under control now. She missed a few of her avastin treatments as a result and ca125 rose significantly but still NED on scan so consultant was eager to start her back on treatment. With the avastin, she has always had a cough, nasal drip and hoarseness which although annoying she can cope with. However since starting back on treatment this time her throat is very sore and voice is completely gone. Gp gave her antibiotics and later steroids..said likely viral. No improvement after 2 weeks so she went to ENT specialist. Scope done and throat and vocal cords all look perfect. She had chest X-ray so waiting for results of that. We see ENT specialist again tomorrow. I feel the voice loss (since all looks well on scope) may be caused by the avastin (although don’t know what’s causing the pain!). Could also be something sinister I suppose underlying not detectable be scope. She’s really depressed not being able to talk and don’t see how she would cope with avastin being the cause..she won’t want to stop avastin as it’s working for the cancer but I know she will have no quality of life not being able to talk.

So I suppose I’m just wondering has anyone else lost their voice completely on avastin? I know hoarseness is an expected side effect.

Thanks x

[Maus123]

Hi there. Sorry, I can't offer any solutions. But I might be on a similar journey.

I've been on Avastin for almost a year now. Over the past 10 weeks or so, I've developed a persistent tickling cough (along with a slightly hoarser voice) which seems to sit in my throat. I can't seem to shake it either, not with a variety of asthma/bonchitis sprays (with or without steroids), nor with the antibiotics I'm currently on. Codeine suppresses the cough for a few hours, but doesn't cure it. A recent chest CT and lung capacity test came back clear. My next step would be ENT too. No clue if Avastin is to blame (official manufacturer's information doesn't list a cough like that as side effect), but I'm slowly running out of alternative options.

However, my voice still works, so there's that.

No wonder your mom is distressed. It would be catastrophic for me if I lost my voice (though it might depend on the perspective; my husband, family or colleagues might see it differently ).

What has she tried in terms of teas and lozenges? Gelorevoice, Isla Moos seem to help me coat the back of my throat, which also improves my voice for a time. Fennel honey (from the pharmacy) mixed with sage tea seems soothing as well. Possibly way too weak to help your mom though.

Maybe her oncologist thinks about trying to get her off Avastin and onto chemo, as a possible alternative.. to see if her voice improves and the cancer / ca125 can still be contained? Not that chemo is such an enticing thought. But losing your voice entirely is just really difficult to deal with, I'd imagine.

WIshing her the best. xx. Maus

[Puggle in reply to Maus123]

Thanks Maus. Ya she has had the cough, persistent tickle since starting avastin. Also very hoarse for a few days after getting it each time. The consultant is dismissive of it but it is definitely from avastin..I’ve read alotbof people suffer from the same side affect. Although the cough is really annoying she has put up with it as the avastin really has been fantastic for her keeping the cancer at bay. Losing the voice is hugely affecting her life.

I have just spoken to my dad on the phone and she coughed up a lot of brown/Black Phelgm last night so I’ve a feeling the chest X-ray she had on Friday night reveal something. She is due avastin tomorrow and is to see the ent specialist too. I’ve told her to pack a bag as feel she may be kept in and doubt she’ll be getting her treatment. I’m going with them too.

The plan was always more chemo once cancer showed up again, then a parb inhibitor as she is brca 1. She has responded really well to chemo in the past so there is hope but I’m not sure how well she’ll be able to tolerate it 3rd time around and nearly 70.

[Lindaura in reply to Puggle]

Really interesting reporting on your Mom.

But, 70 is not too old!

As she is BRCA1 positive, my advice is to stop the Avastin and go on to a PARP inhibitor now.

You are a good daughter.

Keep up the good work.

Hugs,

Laura

[Maus123 in reply to Puggle]

Good luck with the appointment today. Hope there will be a way forward that grants her a chance of getting her voice back. xx. Maus

[Lyndy]

Puggle-she’s not taking ramipril for BP is she? I found it caused horrible tickly cough and sore throat. x

[Puggle in reply to Lyndy]

Possibly. I do know they changed her bp meds shortly after starting avastin and it did make cough worse so changed them again and it improved but only a little. Since November she has seen the nephrologist a few times and he has been trying different meds to get her bp under control. It’s stable now but not sure exactly what she’s on. Will have a look tomorrow. Thanks.

[Maus123 in reply to Lyndy]

Interesting, Lyndy. Now that you mentioned it, I've googled a bit and will bring up this topic when I next see my GP (taking Ramipril / ACE inhibitors too). Not sure there is a suitable alternative though that doesn't come with its own issues. It's a daisy chain of side effects to consider sometimes, isn't it.

Xx. Maus

[27-359]

Hi. I had a cough throughout Avastin, and it continued to a lesser extent for about a year after finishing Avastin. This drug definitely affects the throat in some way. It always seemed to me to be caused by a throat irritant rather than a chest "thing".

[LittleSan]

Hi Puggle, I was on Avastin for nearly 3 years. My story is identical to your Mother's. Halfway through my voice gave up completely. The camera showed up no damage to the vocal chords but a slight phonal gap. I had speech therapy and my voice improved somewhat. At the same time I was treated for a fungal infection and that seemed to help my voice too even though there was no obvious signs of fungal infection in my throat. The main exercise that seemed to help was diaphragmatic breathing and expelling the noise Eeeeee on an outward breath. My voice is still husky 18 months after finishing Avastin but it is fully functional and it was a great drug for me.

Please remember that we can only give our experience on here which may help you ask the right questions. The medical team are the experts.

Hope your mum's problems resolve soon, it's so, so frustrating and isolating not to have a functional voice.

💐😘

[Natsmb]

Oh my goodness. I have to admit, I have a whole lot of side effects but an effect on my voice has not been one of them. Will concur with The chronic sinus nose issues. Particularly the week after avastin infusion. It's definitely something to look into. You may call the company Genentech and directly talk to one of their people and see if it's something they've ever encountered. I found that when I called them up I got a few more specifics because when they list the side effects, specific issues like long-term muscle cramping and feeling shaky Etc are lumped under a single label and I got a few more details that made more sense to me when I called them.

So very sorry to hear this. I'm in the same boat. I'm trying to manage quality of life with taking avastin which extends my life.

Here's an observation I made. I've been taking it since last October. The side effects have compounded over time and now leveled off to a somewhat tolerable place. Various times, post-treatment, I found that at any time any one particular muscle would really flare up when I did something repetitive like typing or washing close. And it wouldn't stop. and it's never necessarily the same muscle group. Sometimes it is my knee, or my foot, sometimes it is my upper arm, sometimes it's the side of my neck because I'm turning while I drive. It's even been the muscle I use when swallowing. THAT wasn't fun! LI wonder if this characteristic of muscle groups responding at various times might include the voice muscle? Anyway, I hope things get better.

[Puggle]

Thanks for all the comments. They have been really helpful. Today ENT specialist found no change really just slight inflammation of sinuses but wouldn’t account for voice loss. Chest X-ray from Friday was clear. So he advised she be admitted for further investigation which she was. Blood tests showed high CRP so definitely inflammation somewhere whether that’s infection or cancer we’ll have to see. They’re treating with iv antibiotics now and she’s had a ct of sinuses and chest area so hopefully results on that tomorrow and her consultant will be around. They held off on the avastin today. We’re glad they are looking into it. She has no temperature and feels quite well apart from soreness in throat and occasionally coughing up brownish mucous.

She did comment that she has gotten very shaky and shake in both hands very evident today. She said she’s been that way for a while.

I’ll update tomorrow when we hear from consultant x