Targeted therapies?

[Bleubleu]

Hi, I am really struggling with the Avastin & Lynparza, constantly tired & breathless, has anyone else experienced this?

[Kjpip]

Hi Bleubleu, I was on the same regime, but have just finished the course of Avastin so am now just on the Lynparza. I get very tired sometimes, but not enough that I can't manage to do everything I want to (so long as I plan things and don't do too much all in one day) but I personally haven't been very breathless with it.

I would talk to your oncology team about your side effects, because they might recommend reducing your dose which I believe can make a lot of difference to the side effects without reducing the efficacy of the drugs. They don't want you to suffer!

I hope you find a solution, good luck 🤞

[Trickysite]

my onc advised me against Avastin so I am just on Lynparza For last 18 months, the dose of which was reduced from original 600 mg to 400 as I had anaemia. There are lots of adjustments that can be made if the side effects are difficult. Speak to your onc. Best wishes.

[Carpediem68 in reply to Trickysite]

Do you mind if I ask why your oncologist advised only Olaparib? I've been on both for a year but had to stop avastin and Olaparib separately a couple of times for different things. I'm currently off both for a week due to low wbc.

[Trickysite in reply to Carpediem68]

I suspect I was advised to take only Olaparib and not Avastin because I have congenital Ehlers Danlos Syndrome (over elastic collagen which affects all soft tissues and makes me vulnerable to longlasting muscle spasm) and Avastin can have some rheumatalogical side effects, I think. On the Olaparib, I have heavy legs and balance problems which my onc says are likely to resolve when I stop it and the EDS makes me more vulnerable than most to this particular side effect.. Also, I am BRCA2 positive, and Olaparib is meant to be efficacious with BRCA people. So, I think the thinking was Olaparib alone is best for me. I am 4b. I was NED after 10 hour op and have been NED for last 18 months. I have had to come off the Olaparib for one or two weeks at a time about 3 times, mostly at the beginning of treatment when the dose was too high and knocked out my white blood cell count and again when I had gastroenteritis infection. Possibly, also came off when I had covid twice and was on anti-virals. My understanding is you can come off Olaparib for 2 weeks at a time and you are still ok. Hope this helps, Emma x

[Carpediem68 in reply to Trickysite]

Hi there. Oh, I'm so sorry to hear about your rheumatalogical condition! Yes, I've had a lot of joint/muscle aches with these drugs, mainly due to Avastin I think. I had a break and dose reduction with Olaparib right at the start due to low wbc. Now after a year I have to have another break. It's all such a balancing act isn't it? Great to hear you have been NED for 18 months. Long may it continue! x

[Bleubleu in reply to Trickysite]

Hi, yes that has been very helpful, thank you!!I've got constant arm & shoulder ache in my right arm but saying that I was diagnosed with arthritis in my right wrist 10 years ago so my Oncologist thinks the Avastin may have triggered that arthritis so I now have pain on that arm & shoulder which no pain killers ease, I've an MRI Thursday to confirm this!!xx

[Bleubleu in reply to Trickysite]

Hi Trickysite

Thank you & that helps a lot!!Yes they said because I am BRCA positive, Lynparza would benefit me & even though after chemo in November, my scan showed NED, I am always asking for tumour marker tests as I know with my cancer it was grade 3 high grade so it was a case of respond well to chemo or it would've been palliative care!!!My Lynparza has been delayed many times since started as blood levels dangerously low I needed blood transfusions but thay was merely down to Folic deficiency anemia which should have been picked up quicker but it is what it is but I'm still tired!!xx

[Trickysite in reply to Bleubleu]

When I was on 600mg Lynparza, anaemia hit me and I had 3 blood transfusions at one sitting and on 500m I had one transfusion. On 400mg, I am ok and I take spatone liquid iron every day. Good luck. Emma x

[Lyndy]

Hi Bleubleu,

I can understand your frustration, you have done your treatment and now want to feel well, not pulled down by fatigue.

I assume you have done all the obvious things…check blood levels, given it a bit of time to resolve (Parp inhibitor side effects can lift after a couple of months), reported side effects to your team?

You may be left with a decision to reduce or drop one of these drugs.

Having had both individually, I can say that I wouldn’t fancy having them both at once. Of the two, the Parp inhibitor is the newest and highest value drug, if you drop it now you may not get another chance with it. So of the two I would suggest you focus on maintaining this… they can reduce dose, so that might be an option.

I think a frank conversation with your team might be really useful. Fatigue can be dismissed with a ‘well what do you expect’ response. I know that I get depressed if I can’t walk my dog, so for me, having lung capacity is essential and part of the bargaining between quality of life and long term treatment.

Maybe you need to say assertively that you can’t put up with it. They must do something to ease these side effects.

Expect to negotiate with them about dose levels and length of time (I dropped Avastin early).

Good luck xx

[Bleubleu in reply to Lyndy]

Hi Lyndy.

Thank you!!All the advice really does help & yes I think taking the 2 together is proving too much so will discuss this with my Oncologist Thursday!!😎xx

[Newbery3]

I'm on the same regime, I have lowered my parp to 400mg from 600mg. I still get the fatigue but not breathless, maybe a blood test is needed to check your levels. I'm also on the lynpraza Facebook group and that really helps as I know a few who've reported being breathless so worth you checking ✔️. I'm stage 4 hrd positive breathless negative and was told to attack it with both drugs from the off to give it a beating back 🤣😊 I feel ancient some days but I'm hoping it's doing its job! Just had my scan results 1st time since operation last September and I have no new disease and am still NED xx good luck xx

[Bleubleu in reply to Newbery3]

Hi Newbury.

Excellent news with the NED I can only presume it's No Evidence of Disease (sorry I'm new to this site so pardon me if I'm wrong) My dose of Lynparza has also been lowered from 600mg to 400mg but as if chemo wasn't enough, I think I feel more ill with the targeted therapy!!! xx

[FlowerRose]

Yes! Definitely tired, definitely breathless! I've been on this combo now three years and you might not want to hear this, but it did get better....only recently Maybe in the last 6 months I finally started feeling more like I used to (which still wasn't ever high energy!) My worst side effects were bad nausea, full-body tingling, tired/breathless and sort joints/muscles. They've all eventually worn off and now I feel much more normal-ish. But...only 3 years in. I guess once I adopted the "this is the small price I must pay" mindset, they were all a little easier to handle. I hope you get there too faster than I did.

[Trickysite in reply to FlowerRose]

Are you on Olaparib for 3 years? I thought the usual length was 2 years. Any reason why you are on it for 3 years, please? Emma x

[Bleubleu in reply to Trickysite]

Hi No I am only on the Olaparib for 2 years & 18 Avastin sessions but yesterday my Oncologist said they will take me off the Avastin so hopefully my side effects may ease up!!xx

[Trickysite in reply to Bleubleu]

hope u feel much better on just the Olaparib. X

[FlowerRose]

I was initially told 2 years like most people but my onc told me since I'm doing well on it they wanted to keep me on it indefinitely. Most likely will stay on it until it stops working i.e., i have a recurrence. Or after 5 years, whichever comes first.

[Trickysite in reply to FlowerRose]

interesting! Thanks, Emma x

[Bleubleu in reply to FlowerRose]

HI.

I see & yes makes sense I suppose, good luck!!I hope now that they're stopping the Avastin my side effects may ease up!!We have hope!!xx