I have found much worthwhile information from the experiences on this site. I thought it may help someone else in the future to share my treatment changes in the past month- perhaps someone else may benefit from the information.
I am 45 years old. I was diagnosed with Stage 4 Ovarian Clear Cell in May, 2018. I have been on Avastin since September 2018. About every 6 months I've skipped a treatment. My disease has remained stable. I have had several severe side effects including severe muscle spasms and cramping, muscle and joint stiffness, burning and pain, and lumps in my muscles that burn to touch. I get severe fatigue, cramping in my legs, shoulder pain so severe I could not move or use it, joint aches particularly on my right side and in my ankles and wrists, and an inflammatory reaction to my contacts so I had to change brands. I developed high blood pressure and severe pulmonary and pleural effusions. Hopefully this is the end of the crazy side effects.
I recently started taking Metformin with the Avastin. Studies show taking Metformin with Avastin can reduce tumor development- I hope it works for me.
I had to have a pleurodesis to address the pleural effusions. I was not a good candidate for a pleural catheter. I was the first Avastin patient (for my doctor) to be given a pleuraldesis. It makes recovery more challenging but so far it is working. I have to say- the procedure and the healing process has been VERY painful. Not taking painkillers (which I hate) was not an option because with the pain, my blood pressure jumped up so high it was dangerous and impeding healing. Part of this may have a lot to do with how Avastin increases inflammation.
I have managed the inflammation, stiffness and muscular pain with changing my diet. I hope this may be informational for someone else. Blessing All!
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That is very helpful thank you. I’m so sorry you’ve been experiencing all this pain. I’m taking Metformin on top of Letrozole as well as a list of other drugs from Jane McLelland’s book How to Starve Cancer. I added Claritin last week as I’m adding them slowly and it has helped with the bone and muscle pain. I should have done this earlier I think. It’s improving my energy levels too.
I take a Zyrtec. Would that be the same as Claritin? I'm interested in anything that cuts down on the inflammation in the body's immune defense response. I took Claritin initially with the carbo taxol. I didn't think to continue it with the avastin.
I’m afraid I don’t know whether it’s the same active ingredient of loratidine in Zyrtec? I stick as closely to Jane McLelland’s metro map as possible . During chemo I was given antihistamine but I don’t remember what type but they made me very dopey. Claritin doesn’t seem to! A x
Claritin is the one that uses loratadine which seems to be the significant factor ( not sure why!) Home brands by Aldi and wilko contain the same specification and are much cheaper
I actually talked to my doctor about metformin. It's something they're doing here in the states at certain hospitals and have had some positive results. Since my drug was just stabilizing and not actually going into remission I felt it was worth the shot. I pulled off some of the information on the internet and spoke with a friend of mine with the same cancer who was getting a treatment but from a different hospital. So we are trying it. I've only been on it about three weeks.
Thank you! Good info for me I’m going on 3rd avastin infusion of 22.
How often do get get avastin?, I’m on every three week schedule. I still have a dimly lit lymph node(per petscan) after first reoccurrence and 6 rounds carbo/ptaxal
I get avastin every 3 weeks. It sounds like they're hoping to just eradicate something with the avastin and you'll be good so I hope that's a positive thing.!
Sorry to hear that you have been experiencing so much pain. I’m having Avastin every three weeks and I’m also getting that hideous joint and muscle pain and in particular the worst pain is my shoulders, very difficult to sleep at night. Advised to try Naproxen but it’s not touching it.
You said that changing your diet has helped, could you give me more details on what changes you made. Much appreciated.
I hope the changes you have made in your drugs and diet continue to help. Thank you for sharing your experience, always helpful to get first hand advice.
I'll tell you what I did. I don't know if it's going to be the same for everyone. After talking with a nurse and some other patients on avastin we decided that probably what it was was, any food that might have triggered a minor inflammatory response from our body prior to the medicine became ten times worse after the medicine. It was trial and error as I worked out what was the worst and what was the least worst.
I ended up on an elimination diet. I kind of did it all by myself and after several months I've narrowed it down.
The Worst: caffeine, sugar, maple syrup, honey, dates, figs and other super sugary fruits, milk and oatmeal. 🥺🥺
*** IfI eat these within 20 minutes to 2 hours I am positively miserable. My joints start to hurt. My muscles in my shoulders get very stiff and are very painful to move in use. My muscles spasm up. And my body starts getting these hot flashes and heat cycles. And it will last for several days.
Not so Bad in Moderation: oranges, mandarins, melon and berries
The Second Worst but I Can Get Away With VERRRY Tiny Amounts: flour, corn, russet potatoes and red potatoes, rice.
***What I've noticed about these foods for myself are that shortly after eating them I might be a little bit achy. if I stop and don't eat anymore for a while I'm fine but if I continue to eat these I get terribly fluey. I feel like a truck hit me, and it feels like my allergies are just running amok but in my joints instead of in my sinuses if that makes sense. I just feel sick sick sick.
Not So Bad in Moderation: sweet potatoes, quinoa, tapioca and cassava based products.
I'm basically on a keto diet. I can eat cheese and for some reason that doesn't bother me because it's not the lactose intolerant to do, I think it's the sugar in the milk. My friend is hypersensitive now to lactose where she was only sensitive to it before. I don't think everyone has quite the DraStic response I did to this. Also, it took about three months before it all manifested. for at least three to four months I was eating as usual and didn't have quite the negative inflammatory reactions. Now it's definitely instantaneous for the most part. And if I eat something I can tell more than 2 hours to 2 days.
hope this helps. Hope you're not as bad off as I am because I'm hungry a lot of the time. I've kind of given up enjoying food. What I'm happy about is that I don't have quite the misery I did before
So sorry to hear about your painful joints etc., couldn’t you stop the Avastin?
I too have recently started on Metformin and atorvastatin plus 2 other drugs, based on the Jane McLelland (How to starve Cancer) too early to say yet what effect they will have!!! However I am tolerating them reasonably well. I have stage 3 Epiltheal Ovarian Cancer which has metastasised after 7 months clear, I was diagnosed in 2018, have had 2 major ops plus 6xcarbo platin & ? am now on my 3rd carbo platin/caelyx of 6 then will progress with niparib!!! All being well I intend to continue on this Protocol alongside the chemo etc.
Hello Iside,My wife was diagnosed 3c/4 in novemebr 2019 and we have considered the coc protocol similar to what you are doing. May I ask if you are still doing this ,
Hi Tim,Yes I am still taking the Protocol, over a year now and to be honest I haven’t ever been free of the OC, it has stabilised after chemo & Protocol now on 3 occasions but I am still battling.
If I can answer any other queries you may have would love to.
Hi Iside,I really appreciate you taking time to reply and I am glad to hear you are doing ok. Its a very difficult journey as it has been for my wife as well. She is trying to decide on whether or not to proceed with the coc protocol and I guess we are nervous of straying from our consultants advice which is niraparib and now given an increase in blood pressure some additional meds.
We are afraid that the consultant will say no and perhaps not support my wife going forward. He is a very good consultant and we believe in him but having read jane mclelland's book feel we should be doing more.
Also niraparib is causing a lot of fatigue for my wife. But it sounds as if you have had benefit from the coc protocol.
I really hope and pray that you continue to do well ,
Hi Tim, I have never been offered Niraparib or any other Parp inhibitor hence my reason for taking the Protocol. When I have finished my 3 chemo treatments the Protocol has been my constant.My Oncologist team know I am taking it and never express an opinion.
The support I have from the COC is very comforting, I have a nurse specialist who I contact if I have any probs., or queries and an Oncologist who I speak to every 3 months. My friend, who is a GP of 35 years practice is also on Protocol and fortunately her OC has been NED for the last year.
I would go with Niraparib every time. It’s a wonder drug. But it sounds like she might be on a high dose? How many mg is she on?
I struggled on 300mg, then 200mg but on 100mg I have a good quality of life again. And it has saved my life thus far (nearly 4 years).
I looked into the COC protocol as am very much into complimentary treatments, but I would follow your consultant’s advice. I would recommend you talk to them about the dose she is on..
Please don’t hesitate to contact me if you need a chat or any advice. I’d be very happy to help you.
Thank you for taking the time to share your experience of using Niraparib.
My wife is on 200mg of niraparib but has been feeling very sick for the last 4-5 weeks. She is also on high blood pressure meds and her heart rate can race if she does excercise. I realise these are known side effects of Niraparib.
Last saturday she was prescribed Zafron(ondansetron) for sickness and it has helped a lot. She is feeling much better . It is great to know that for some Niraparib has been very beneficial . Hopefully as my wife has been using niraparib for only 6-8 weeks it may settle down .
Once again thank you for your kind advice and support,
I have discussed the idea of different treatment plans with my doc. I never responded to the taxol or carboplatin treatments- went from stage 2 to stage 4 in 9 weeks. I tried another drug but it too had no response. The last positive one (the one lab tests showed would have the best chance) was Avastin and after the disease had metastasized to my lungs, esophagus and stomach- this actually worked. Some tumors shrunk and disappeared, a couple have just kind of held on but made little to no progression. So it is basically the only thing I am being treated with at this time. The metformin is more to supplement the effectiveness of the avastin. I am hoping it will push the disease from stable to regression!
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