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Blue light focal laser treatment

User
Posted 11 Dec 2016 at 11:50
Hi all,
Very early days for us. My husbands PSA came in at 3.5 at company medical so was repeated by GP who got the same result.

Referred to urologist who has sent off a urine sample did a contrast MRI and booked husband for biopsy ( FiL died of PC in June) . Just before general anaesthetic he said the MRI showed abnormalities so he was aimi g for those areas.

Awaiting results now and researching. Urologist is a big advocate of surgery.

I am looking to understand what else is available. I see the Sperling clinic in New York offers this blue light focal ablation treatment and there has been a clinical trial in the UK ..,anyone know anything about availability in UK?

User
Posted 31 Dec 2016 at 21:19

Chris,

No doubt Clare will advise but most probably from the results of the PROTEC T trial carried out in the UK. It has been reported on around the world and here in the New England Journal of Medicine. http://www.nejm.org/doi/full/10.1056/NEJMoa1606220#t=article

Although, at 10 years there was little to choose between the groups that had surgery, RT and AS, what I thought was an interesting difference was the significantly greater disease progression in the AS group and the need for treatment intervention in many cases for men in it. It would be interesting to see how in due course this greater disease progression in the AS group affects men over a longer period, say at 15 years for example, compared with those that received early surgery or RT.

Barry
User
Posted 01 Jan 2017 at 02:21

Hi there,

http://prostatecanceruk.org/about-us/news-and-views/2016/12/national-prostate-cancer-audit-results-most-men-happy-with-curative-treatment-but-overtreatment-still-a-problem

This is the link to the 14th December National prostate cancer audit results

It does include the protecT results from the UK which is a big deal for those with a low risk diagnosis and being advised surgery...

I too wish we had 20 year results, but pleased in 2006 someone got their act together to make these 10 year results happen and think the 2026 world of treatment for this disease is going to be radically different thanks to work bring pioneered today.

Prostate cancer UK doing a great job pushing NICE into reviewing the guidelines 2 years ahead of schedule.

Still found no evidence to support this decision to invest NHS resources so heavily in robotics though... Interesting!

I raise a New Year Toast to the work being done by Prostate Cancer UK pushing the boundaries and challenging the accepted.

Clare

User
Posted 20 Dec 2016 at 14:08

From what I read in press this morning  it is not available yet on NHS as needs to be evaluated by NICE.  50 per cent of those treated were suceessful which presumably means 50 per cent weren't? No apparent long term side effects.  Have you read the toolkit from this site for all options?  Good luck with treatment which ever you choose.  


Elajai

Show Most Thanked Posts
User
Posted 11 Dec 2016 at 16:48

Thank you so much Barry, that is really helpful. I suppose like for everyone it's all a steep learning curve despite having my father in laws experience it has come out of the blue as he has no symptoms is fit and well and it's only the company medical that has flagged this PSA test and at the first consult we are being introduced to the concept of dry orgasm and stats on incontinence post surgery..,

So I now want to learn quickly as if I had read up a week ago we would have travelled for a MpMrI but just took what we were offered this week.... Contrast MRI and straight into template biopsy.

So yes travelling is an option ... We just need the diagnosis but with a family history, a raised PSA and abnormalities on this weeks MRI we are preparing to get the cancer diagnosis but now want full information. Really appreciate the help Barry.

User
Posted 11 Dec 2016 at 19:35

Hi Claire


As Barry said, it's worth seeing what is available within your area but first wait for the results. This site is a fantastic resource, so take the time to read the posts particularly about diagnosis and treatment. in that way you will be fully prepared to ask the right questions at the diagnosis meeting, which will allow you to go away and consider your options.Best of luck,


Chris

User
Posted 11 Dec 2016 at 20:12

Clare,

I didn't mention this in my previous reply because it seems less likely in your husband's case from what you say but sadly PCa is not discovered in some men until it has advanced and metastasised. In some of these cases a common treatment is to have Hormone Therapy and according to developments Chemotherapy and other down the line treatments that treat systemically as those that only reach the prostate or just beyond can be of limited benefit.

There is no single 'best' treatment for PCa; there are pros and cons for each and it is important to consider not just how successful each may be for an individual in terms of slowing or better still curing the cancer but the potential side effects. So the question men should ask themselves is not 'what is the best treatment for PCa?' but 'what is the best treatment for me?' Different men even with similar PCa stats may well arrive at different conclusions. If going abroad, consideration has to be given to the possibility of several visits including a long one for some types of treatment. Some UK areas will not accept anyone treated privately coming back into their NHS area later for monitoring and subsequent treatment should this be needed.
Treatments for PCa have been considerably refined over recent years and this is ongoing. The single most important factor is early diagnosis.

Barry
User
Posted 11 Dec 2016 at 21:55

Oh sh%t,

My last post on this thread took ages to come up so I assumed it was not going to do so. Of course as soon as I tried again it double posted! I then tried to delete one of the two but instead it deleted my original reply to Clare. As least she did receive it previously although it's no longer there now.

Barry
User
Posted 11 Dec 2016 at 23:54

Thank you Chris and Barry,

I will definitely use this community, it has already been so informative and I really wish I'd visited it last week. I am reading the threads. Trying to master the lingo and am seeing that this cancer is a tricky tricky one.

With the PSA trigger test coming from a company medical we are curreny getting diagnosed privately via BUPA but that didnot get us an MpmRI scan as it doesn't appear we have one in the area. So the fundraising being done on this site is amazing - everyone should be getting this type of MRI before a biopsy in my opinion.,
Great advice re being careful on NHS v Private.. That hadn't crossed my mind. All we have used NHS for was the repeat PSA and referral from GP.., we may have been better off in NHS and need to understand all imitations...
So when we get the doagnosis we will listen to advice .. Our urologist is a top surgeon but I will want going forward to have full info and so I really appreciate the forum.

My father in law was a late diagnosis and had the hormone treatment chemo and radiotherapy route..,diagnosed 20 years older than my hubbie is today.

Thank you both so much.. For me I need to research to give me a feeling of control so I can keep it together.

User
Posted 14 Dec 2016 at 21:40

Gosh - waiting for a diagnosis does make time seem different! Biopsy was only last Thursday and I am going mad with the wait!

User
Posted 20 Dec 2016 at 09:55

Just seen on bbc really positive news about the European focal laser treatment for low risk prostate cancer.

Due to get results on Thursday

So far we know

53 years old
PSA 3.5
DRE showed nothing
MRI showed abnormalities
Biopsy results informally that it's not benign nor is is bad
Family history - his dad diagnosed advanced at 72 died at 78

Am def leaning to a focal laser solution ... Any thoughts?

User
Posted 20 Dec 2016 at 14:08

From what I read in press this morning  it is not available yet on NHS as needs to be evaluated by NICE.  50 per cent of those treated were suceessful which presumably means 50 per cent weren't? No apparent long term side effects.  Have you read the toolkit from this site for all options?  Good luck with treatment which ever you choose.  


Elajai

User
Posted 20 Dec 2016 at 23:03

I saw this on BBC news tonight and recognised the Professor at UCL (UCLH) as the leading UK authority on Focal Therapy, mainly HIFU. He is leading the FORECAST trial in which I had salvage HIFU last year, although he was not my surgeon. He and his team seem to be evaluating several forms of Focal Therapy. Just before I was treated they ended a trial on Nanoknife (Irreversable Electroporation) and now have this study on Focal Photodynamic Laser Therapy. My consultant wants me to be seen by this Professor at my March appointment and if this happens I will take the opportunity to ask how he sees the competing therapies. I suspect he is likely to say it's too soon to say and that some patients are likely to benefit more than others depending on their individual cases. http://www.bbc.co.uk/news/health-38304076 and http://www.nhs.uk/news/2016/12December/Pages/New-laser-therapy-for-low-risk-prostate-cancer-shows-promise.aspx

Edited by member 20 Dec 2016 at 23:12  | Reason: Not specified

Barry
User
Posted 21 Dec 2016 at 00:19
Hi Elijah,

Thank you' re toolkit reminder - I have indeed read all options ...it's been a learning curve but I do feel happier going in to the diagnosis understanding more so thank you to prostate cancer UK for this wonderful resource and indeed to all the contributors.

Clearly until we have the actual figures it's all academic but I have explored all focal treatments that I can find info on as well as all the currently available options.

I had a very detailed e mail replay from the Israeli company who make TOOKAD with the data of their definition of low risk , which may not apply to us but I prefer to know the data. You are correct it is not approved for use in the UK at the moment . To access it would involve a wait or a private trip overseas.

I think the guys taking part in the trial had no downside given they were low risk and of the 206 allocated to the TOOKAD treatment 100 are cancer free at the 2 year mark without the side effects of the traditional options... The 12 who ended up in surgery anyway are no worse off than with a traditional treatment choice - the rest are still being actively monitored is my understanding.

So all academic till Thursday for us but hopefully in the future it will mean less side effects for at least some and that seems to be the main upside to me.

Regards

Clare
User
Posted 21 Dec 2016 at 00:24

As far as I can see, they are suggesting that as a primary treatment it would only be suitable for men who currently would be encouraged to consider active surveillance, and/or G6 (3+3) or below ... since it is rare in the UK for men to be allocated less than a 3 this is only going to benefit a small minority of patients. Not then a future reduction in side effects for men with PCa that needs treatment but a possible drop in the number of men who opt for AS

Edited by member 21 Dec 2016 at 00:27  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Dec 2016 at 00:53

Hi Lynn,

They say it's for Gleason 6 (3+3) but will consider Gleason 7 (3+4) but with other proviso's ! So yes it's a treatment for low risk PCa.

From the lancet figures 12 of the guys who had the new treatment ended up having surgery by the 2 year mark
62 of the active surveillance control group ended up having had surgery at the 2 year mark

But no help as you say to those with higher Gleason scores. Interested in your point re Diagnosis at Gleason 6 being a minority .. Are the stats available on this site as I haven't seen those yet.

My father in law was diagnosed with advanced prostate cancer at 72 but had never had a PSA until symptomatic so we will never know when it began for him ...

User
Posted 21 Dec 2016 at 02:37

A G7 is medium risk. In the data I think they refer to G2 which is used in some overseas countries but not usually in the UK.

You misunderstand my comment about the minority. A minority of men would benefit from this type of treatment, not a minority of men have G6 at diagnosis.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Dec 2016 at 11:02

This is what they have told me directly

'TOOKAD has been approved for use in Mexico and is also available in Israel under special permit.

The current indication for TOOKAD is for the treatment of localised prostate cancer Gleason ≤ 6; (Gleason 3+4 is acceptable provided that none of the biopsies indicate that it is present in more than 2 samples from a series of 12 or that no sample consists of 50% or more of cancer) with serum levels of Prostate Specific Antigen PSA < 10 ng/mL; clinical stage T1 to T2a'

Hopefully it will get approved across Europe so at least those in this category have a choice

Regards

Clare

User
Posted 30 Dec 2016 at 08:13

Just in case anybody is Iinterested we are seriously considering FLA i. The USA .


Spoke with [Name edited out by Moderator] yesterday


Not sure why the NHS put its recent investment in robotic surgery rather than MpMRI guided focal laser ...next thing on my list to research though ...

Edited by moderator 03 Jan 2017 at 10:17  | Reason: Not specified

User
Posted 30 Dec 2016 at 09:18

Hi Clare
I looked at [Name edited out by Moderator] site. Have you determined your husband's staging is acceptable for FLA? Did they indicate costs? What are the implications for post-treatment care back here in UK?
Have you looked at TOOKAD availability in EU?
Chris

Edited by moderator 03 Jan 2017 at 10:19  | Reason: Not specified

User
Posted 30 Dec 2016 at 10:59

Hi Chris,


[name edited out by Moderator]has had our MRI and biopsy report prior to arranging a conference call with himself and nurse specialist.


He has confirmed my husband is a good candidate ? He takes on higher grade Gleason scores too)


The investment is USD 30,000


We have had initial talks with BUPA that did not write it out under the company scheme. However we are accepting of we go here in all likelihood it will be a self funded exercise.


Our BUPA surgeon has agreed to do the active surveillance psa testing and MPMRI going forward.


At the 6 month heck if you are in the 5% fail rate the re ablation is free. Surgery and or radiation are stil options if you wish to decline tre treatment.


I am talking to TOOkAd guys in an Israel too .. [name edited out by Moderator]agrees this is probably the most exciting new development. We are still in conversation but my husband has bilatterrsl disease and the clinic Al trials have focused on single side disease.


For the USd 30.000 you get [name edited out by Moderator] personally who has done over 1.000 procedures. No occurrence of ED or in contender reported.


Spoke to GP yesterday they have no issues either re referring for active surveillance referral on NHS after this private treatment if needed ( bit the bupa cancer guarantee is pretty sound)


Not decided .., going through the clinical data plus international forums for any bad press... Nothing so far. They are buddying us up with a UK patient who has been through it earlier this year.


Active surveillance still a preference for us from the standard list we were given.


Thanks


Clare

Edited by moderator 03 Jan 2017 at 10:21  | Reason: Not specified

User
Posted 30 Dec 2016 at 11:01

Oh - after FLA around 30%habe reduced or no semen ..,,

This is main side effect..,

User
Posted 30 Dec 2016 at 13:48

Hi Clare,

Just a bit more info from the leading Prof on focal therapy in the UK. My appointment with him has been brought forward to February and I will be asking whether the small tumour still believed to be in my Prostate could be dealt with by VTP and if so within the NHS if UCLH are willing and able to deliver. https://www.ucl.ac.uk/news/news-articles/1216/201216-prostate-cancer-light-therapy

Barry
User
Posted 30 Dec 2016 at 18:02
Thanks Clare
Please keep us updated.
Chris
User
Posted 31 Dec 2016 at 02:17

Will do Chris.

Barry that is very interesting - I know who you mean and he is on the BUPA list so we could request a second opinion from him but clearly need to walk a careful path with BUPA requests ... So far had the initial consult, urine tests, blood tests, MPMRI, template biopsy under general and follow up consult with surgeon for diagnosis

They have this cancer care guarantee but given the potential of asking for a FLA or TOOKAD overseas I am not going to ask for a uk second opinion ...yet

So would love to get piggy back intel from your Feb consult Barry! We are not making any quick decision as I say AS is most appealing to us ATM as for guys offered AS the 10 year survival rate is exactly the same for those taking it up as for those opting for surgery

But the piece of mind offered by an FLA or TOOKAD successful outcome would be better again... And the double blind TOOKAD v AS saw TOOKAD outperform active surveillance ( single side disease v my hubbies bilateral d3+3)

Hmmm...

I have not found a blind clinical test As v FLA though but Sperling have sent some links now...

All intel therefore gratefully received!

Fingers crossed for you both

User
Posted 31 Dec 2016 at 19:31

Hi Clare


My last post before indulging in some bubbly!


Where did you get the stats for 10 year survival rate AS versus RP? I would like to read that.


Best wishes for 2017.


Chris

User
Posted 31 Dec 2016 at 20:41
Hi Chris.

Re protecT trial

I was looking at data the other week .. ummmm
http://www.medscape.com/viewarticle/868791

I would welcome your view and others in new year.

I would like to see 20 year results.
And population appears to be Gleason 6. I need to analyse more. £39 million spend ???
User
Posted 31 Dec 2016 at 21:19

Chris,

No doubt Clare will advise but most probably from the results of the PROTEC T trial carried out in the UK. It has been reported on around the world and here in the New England Journal of Medicine. http://www.nejm.org/doi/full/10.1056/NEJMoa1606220#t=article

Although, at 10 years there was little to choose between the groups that had surgery, RT and AS, what I thought was an interesting difference was the significantly greater disease progression in the AS group and the need for treatment intervention in many cases for men in it. It would be interesting to see how in due course this greater disease progression in the AS group affects men over a longer period, say at 15 years for example, compared with those that received early surgery or RT.

Barry
User
Posted 01 Jan 2017 at 02:21

Hi there,

http://prostatecanceruk.org/about-us/news-and-views/2016/12/national-prostate-cancer-audit-results-most-men-happy-with-curative-treatment-but-overtreatment-still-a-problem

This is the link to the 14th December National prostate cancer audit results

It does include the protecT results from the UK which is a big deal for those with a low risk diagnosis and being advised surgery...

I too wish we had 20 year results, but pleased in 2006 someone got their act together to make these 10 year results happen and think the 2026 world of treatment for this disease is going to be radically different thanks to work bring pioneered today.

Prostate cancer UK doing a great job pushing NICE into reviewing the guidelines 2 years ahead of schedule.

Still found no evidence to support this decision to invest NHS resources so heavily in robotics though... Interesting!

I raise a New Year Toast to the work being done by Prostate Cancer UK pushing the boundaries and challenging the accepted.

Clare

User
Posted 13 Jan 2017 at 12:42

Just back from holiday where we had time to think, research more and plan,


So decision made - we are reasonably happy with the diagnosis process that we received -MpMRi. template biopsy and PCA3 urine test. We are confident in the diagnosis of Gleason 6 and the need for AS goes without query.


However given the family history and the quantity of G6 found we think we need more than just AS for peace of mind if nothing else. Very unconvinced about surgery which feels like an overtreatment to put it mildly and my husband is 53 so the radiotherapy options are too risky re 15 years down the line.


So focal laser therapy in the USA is our decision with [Name removed by Moderator]. It does not prevent more radical intervention in the future if needed, it has no cases of incontinence or ED/


So I will post our journey for the interest of anyone looking for an alternative to the norm. The GP is very supportive and the AS will continue in the UK but with the MpMRI, PSA and PCA 3 results being reviewed by Dr [Name removed by Moderator] as well as by our GP and urologist.The GP wants copies of all correspondence so as to keep a record of our journey,


Clare

Edited by moderator 16 Jan 2017 at 09:14  | Reason: Not specified

User
Posted 13 Jan 2017 at 19:33

Interesting stuff but you have named the specialist another thrice even though the moderator has deleted all your previous ones :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Jan 2017 at 20:00

Hi Clare


Thanks for the update. I suggest you start a new post when you and OH start your journey, which will be very informative for other members. I suppose we should say that FLA is available at a variety of facilities in the USA.


Good luck with the journey. If I was at G6, I would definitely be considering it. I know they do accept G7, but having discussed it with the urologist, who is very well respected, I am going ahead with surgery - albeit reluctantly.


Chris

User
Posted 14 Jan 2017 at 07:39
Lynne - I really hadn't appreciated I was breaching a protocol so now noted- thank you. For explaining. I really am trying to fill a gap in info that I experienced.

Chris - yes I will do as you suggest and that is true there is available I a number of US centres plus being run as clinical trials at phase 2 in many more across the USA.

I am not trying to be controversial in any way but a thread on the growth of focal alternatives would have been helpful to me certainly when we first got the increased PsA result .

Things I would liked to have had more info about:

1. The diagnostic alternative approaches .This site was fab at explaining the push for Mp MRI scanning before biopsy but the wider this message is spread and the more demanding men are for access the better. Only from USA sites have I gleaned the difference between a 3T version and a a 1.5 ( lower resolution) version

2. The impact of a prostate biopsy was not explained I.e the strength of erection can be impacted after a biopsy so I think this should be spelt out.

3. The complete list of side effects of surgery was not spelt out. We had no mention made of impact on penus length or penal atrophy

4. Headline stats given on iED post surgery were presented in my opinion in a misleading way stating 86% success re ED but when the detail is looked at 45% never get an erection strong enough for penetrative sex again. All go forward drug dependent. These are stats of a top UK surgeon.

5. The definition of 'dry' after surgery is when you only use one pad a day-this is not how we would define dry.

6. The availability of focal treatments was not discussed. - surgery was recommended with an oncology referral. The over treatment issue of G6 was not mentioned ( though AS was on the list given as ways forward.

So our Dec 2016 experience has been interesting and. I think the UK has some way to go in urology before the standards we achieve in breast cancer care are reached.

Regards

Clare

User
Posted 14 Jan 2017 at 11:08

I think you have misunderstood the nature of this forum - if you have grumbles about the information PCUK provides on their website, you need to take that up with them.

On these message boards you will find the things that members raise themselves - there are no threads about treatments in America simply because we haven't had any member in the last 8 years or so that has posted about (or actually gone for) PCa treatments in the USA

Having said that, most of the points you raise above I have posted on numerous times.

PS you state that the strength of erection can be impacted by biopsy - I think this is possibly true in a minority of cases but most likely down to worry/anxiety rather than any physiological cause. There is no mechanical reason for a biopsy to inhibit erections

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jan 2017 at 23:32

Clare,

I can confirm that all the things you list have to a greater or lesser extent been discussed on this forum at some stage, sometimes on a number of occasions, except the possibility of Blue Light/VTP which has only recently been undertaken in the UK in a small trial which has now ended. This being a UK forum, it naturally majors on treatment that is available in the UK. (I did my own research to find a trial in Germany for the particular radiation treatment I wanted and I don't think anybody else here has had the Carbon iron element, so this has not otherwise been discussed). Reference to Proton Beam has also been lightly touched on as it has not been available in the UK.

One of the problems with this site which I have raised on more than one occasion, has been how poor the search facility is at providing relevant information being sought. Under the previously used format it was possible to search for information and find relevant threads. Having tried this a number of times with the current format, I find even using the filters there is so much unrelated bumph that I gave up. I have found it quicker to Google what I am looking for and this usually leads to a forum post. This shows how lacking the forum search facility is. I, like a number of others was opposed to the forum being made generally available to everybody rather than restricted to members as was the case with the previous format but admit this does help one find information more quickly and successfully.

Finally, I would say that when questions have been asked, members have done their best to answer and where appropriate give support, also posting on advances in treatment. Also, on your point about there being nothing on 3Tesla scans, I am not alone in having commented on these and other scans over a period of several years.

Barry
User
Posted 15 Jan 2017 at 09:12

Hi Barry, Lynne and all,

I must apologise as I clearly have expressed myself badly and come across as critical of this website, forum and members.

This is the opposite of what I intended as in fact this has been the best and for some aspects the ONLY transparent source of information.

I am actually very grateful to the members for both support and for being prepared to get it out there and I am so sorry that I have caused offence.

I meant that in my opinion more info should be given at each consultation stage of the formal medical process , it was in no way directed at this forum.
Many many apologies

Clare

User
Posted 15 Jan 2017 at 15:17

Hi Clare,


Well glad that that misunderstanding has been cleared up. I think it stemmed from your first point when you said 'Only from USA sites have I gleaned the difference between a 3T version and a 1.5 (lower resolution version)' and the rest we now know concerned the system, the information medical staff provide on diagnostic and treatment possibilities and possible consequences, rather than any criticism of this forum.


Most men with PCa have their treatment within the NHS and are not willing or able to have their treatment many miles away from their normal hospital yet alone going abroad. Furthermore, not all commissioners or whatever title the body controlling funds call themselves are prepared to fund treatments elsewhere that are not available in their area. There was one man on here awhile back who was even refused robotic surgery, it not being available in his area. Trials for more novel treatments often involve only a small number of men who meet a strict criteria and can involve them attending a limited number of centres often far from home. It is against this background that overloaded doctors really do not have the time to discuss all possibilities, some of them unproven or which they know little about, perhaps unsuitable for individual patients. To attempt to do so could initiate long debates on relative treatment advantages in general and as applicable specifically in individual cases of patients. For these reasons, a patient is just likely to be told about and offered what his local hospital provides. This might just be basic surgery and not state of the art RT. (I have made this point on the forum several times when patients seek advice on what treatment to have - something we cannot advise on although we can say there are alternatives if men are suitable candidates and are prepared to go out of their way to find them). Where alternative treatment elsewhere will not be funded and is not covered by an insurance scheme, the choice is likely to be restricted to a form of surgery or radiation if the patient is not able or willing or is unable to self fund and also possibly unwilling to travel, maybe even go abroad. One last consideration is that if so much information is given some patients find it difficult to absorb everything and making a decision becomes even more difficult, particularly as possible and likely side effects also have to be considered.


 

Edited by member 15 Jan 2017 at 15:22  | Reason: Not specified

Barry
User
Posted 18 Apr 2017 at 13:51

Would be interested to know if you have started a new conversation about your US FLA journey.


Thanx for your help.

User
Posted 18 Apr 2017 at 19:13
Yes the current thread is called Focal Laser Ablation

The procedure went well. Recovery proceeding ( he is back working full time) too early for PSA tests or new scan ATM re success or otherwise regards the PCa

Regards

Clare
User
Posted 19 Oct 2017 at 19:51

Bounce for bears daughter

 
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