Lyndy

Oh Jenny I really feel for you! It’s hard to pick yourself up, particularly when you are tired and in pain. You seem to have had a lot of hard news recently, it’s not surprising that you are down. On the Adcal and alendronic acid…I also had issues with these meds. The solution I found is to have AA by infusion and to take vit D without the added calcium (which made me constipated).

Regarding the back ache, maybe they could do more if they knew exactly what’s causing it?

You may feel that getting a second opinion is just too much right now but you could ask for the scan to be brought forward?

Your CNS needs to know how you are feeling and that you want to be well for your sons visit. I am aware that hospices are the experts when it comes to controlling pain and other symptoms, so if you aren’t already in touch with them locally you could try that route.

Don’t forget that your son just wants to see you, he won’t mind if you need to pace yourself or just sit still xx

27-359 in reply to Lyndy

Thanks for the reply. I have got my scan appointment in a couple of weeks, and see the oncologist two weeks after that. I am in contact with the hospice, and it was them who prescribed the Oramorph.

Jenny

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delia2

Hi Jennie. I just want to say I’m sorry you are in pain and I understand how you feel about your son’s visit. Maybe weekly taxol would be more tolerable aside from the hair loss and possible neuropathy? And don’t some people try letrozole if they can’t tolerate a anastrozole? Mainly I’m sending very gentle hugs.

27-359

I have an oncologist appointment later in the month so will see how I am tolerating this regime. As much as anything it's the fact that he said both are only about 20 per cent effective. It hardly seems worth it!

Saintgermain

Hi Jenny,

I tried Anastrozole but discontinued I have degenerative arthritis hated the way I recently started Letrozole since my Endometriod OC is estrogen positive this is by no means a recommendation and you need to check with your doctor but I am taking it MWF which seems more tolerable I guess they've done intermittent dosing studies with BC patients and you still get the same benefit so far so good its either this or I'm not taking Estrogen Inhibitors they all have similar side effects.

27-359 in reply to Saintgermain

I have bad arthritis too! What does MWF mean? I am oestrogen positive too but will just have to see how it works out I suppose.

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Saintgermain

Like yourself really made my Arthritis flare I couldn't tolerate it every day I take the Letrozole at night Monday, Wednesday and Friday slight side effects so far but not anywhere as bad it was either trying that or not taking any estrogen inhibitor at all.

27-359 in reply to Saintgermain

I will see how I go. I have only taken it for one day so far!

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Saintgermain

some people have mild to no side effects I’m so hoping your one of them😀

Tillymint61

I am so sorry to hear you are in such a bad way and with a wonderful event to look forward to in July I understand desire to try and get on an even keel. The first thing that strikes me is to push to get your pain under control. I was given oramorph to control pain whilst having an infected wound dressed so it was for, if you like, the 'passing pain' that caused not for constant long term pain.

You sound like you are in constant pain and that needs controlling. Maybe ask about using morphine patches. I was prescribed these during a painful period when disease was active last year. I was very reluctant to use them initially as I believed they may knock me out completely. After careful explanation,from my GP I used them and they made a big difference for me. Might be worth asking for yourself. All your coping mechanisms will not function if you are in constant pain. Iam sure with a bit of thought your team can get pain under control without you being too out of it.

I do feel we almost expect pain to be part and parcel of this disease and so we put up with more than we have to. In truth it need not be with the right interventions.

Unfortunately Iam also aware it can take a lot of pushing from our end to get what is needed. (Not always as there are many in this group who haven't had to an have more 'proactive ' teams involved in their care.

I wish you well and do let us know how you get on.

Xxx

27-359

Thank you. X

SUE7777

Hi Jenny, I'm really sorry your finding yourself in this situation and want to send a big hug. I finished weekly Taxol about 6 weeks ago and my CA125 went from 393 to 33 over 5 months, I did begin to feel pretty horrible towards the end. When I finished I started vomiting and feeling really awful and my onc made me go to A&E she refused to see me as an outpatient, they gave me a thorough examination and could only find dehydration as a problem. I started taking the highest dose of Pro-biotics I could find and have been feeling much better since. I've been on the prompt trial for a couple of months and am feeling very well but don't know if it's working yet. I have been given 10% as the chance of it working but I think 10% is better than 0%. Hope this helps just wanted to let you have my experience. All the very best with whatever you decide to do and enjoy your sons visit. Sue xx

27-359

I have been thinking that perhaps I should have tried Taxol rather than the Anastrazole. Your CA125 results look encouraging. How many chemo regimes had you tried before the weekly Taxol?

Ruebacelle

Interesting they give you a percentage. No 2 patients react the same way I had aggressive reoccurence and did weekly taxol for 8 months and it wiped out almost all but one tumor

27-359

I did ask what the chance of success was! Had you had the other usual treatments, e.g. Carbo/Taxol, Avastin, Carbo/Caelyx and a Parp.

RoseMS

I’m an OC patient and doing well on a PARP. However a male friend of mine with serious osteoporosis has recently had an infusion which will be annually as he could not take alendronic acid orally which made him very very ill. This has been marvellous for him and enabled him to have spinal surgery. It was a long road for him to discover this but maybe this is something you could ask about, the annual IV infusion instead of the oral alendronic acid?

27-359

Thank you. I rather think that if I tolerate the Alendronic Acid, they will not think it necessary to give me the infusion. I shall have to see how it goes.